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April 14, 2012

April 14, 2012: Four years today we said good=bye to you, Jack. Why does it feel like it was just yesterday?

Please visit our new website and blog, You've Got to Have Heart at http://www.twokidsandaheart.com/blog--youve-got-to-have-heart.html. Please subscribe to be email updates.


This Caringbridge site began when our two precious boys, Jack and Cooper, were born in 2004. It has served us well to stay connected with the many supporters of our family. So many of you have helped us over the years with your kind words and sage advice. Those words helped us get through many dark times.

You've been through the ups and the downs with us, and the final good-bye to our darling angel, Jack. The utter devastation of our family.

It was after Jack's passing that we began to unravel the truth about his care and the information that was kept from us. It was another blow to our family to uncover the ugliness around the people we trusted for Jack's care.

After our research and investigation into Jack's care, we recognized we had outgrown our Caringbridge site and needed to create a new website. We have continued our journey at www.twokidsandaheart.com. We hope you continue to follow our family's journey in telling Jack's story. Our goal is to help other families avoid the mis-steps we made in trying to get the best care for Jack.

We are in the process of writing a book based on our Caringbridge journal entries about Jack's journey, his inspiration, sense of humor, and the love he brought to our family. An excerpt of "The Jack of Hearts" can be read on our new website.

We thank you for your love and support over the years on these pages of Caringbridge. You'll never know just how much it has all meant.

With love,

Todd, Robin, Cooper and ^Jack^

Monday, October 17, 2011 9:40 PM CDT

Seven years ago today, Jack was just getting settled into his room after his transplant. We were anxiously awaiting our chance to see the little baby we allowed to be wheeled off to the operating room. A big smile on his face, unknowing to what his parents had agreed to on his behalf.

We finally entered his room. The lights were bright and there was a lot of movement as the towers of med pumps were surrounding him in his warming bed. His little body was spread out in a warming bed, bloated and cold. He didn't look bad per se, just different. Maybe we were just conditioned to tubes and machines by then.

He would never be the same--never have the heart that we gave him. He always had heart, though. The happiest kid you would ever meet. That was the gift that God gave him.

If you were still here Jack, we would have had our celebratory dinner and taken lots of pictures. We talked a lot about you today, not that we don't everyday, just more about where you were and at what time. This weekend we made your road beautiful just like you.

We hope Heaven enjoys your laughter because we miss it so much. Keep entertaining the masses. We'll join in when we get there.

We miss you,

Mom, Dad & Cooper

Friday, July 1, 2011 11:17 PM CDT

Jack - my little buddy, we celebrated you and Coop's birthday last weekend. We had fun, as you know, seeing the sites in Manhattan. We felt your presence and that comforted us. You are always on our minds. We still experience the feeling of guilt sometimes when we have fun, but then we remember that this was one of the lessons you taught us. Thank you.

The scars of your passing are ever present, however our souls remain strong and hopeful. We love life and sharing it with your beautiful brother, we also look forward to our reunion someday. We are servants of God and will do his bidding, coming home when he calls us. It will be a glorious day. Until then though, we have a lot of life to live and are doing our best to do it to the fullest...especially enjoying the other wonderful gift God gave us on June 26th, 2004.

There's probably not a day that goes by that we still don't shed a tear thinking of you. It's not tears of sorrow or regret, but rather of just missing you in our daily activities. I always say I didn't lose a son, since I know where you are; but rather I just miss you. You. I wish I could touch you again.

I ask God every night to allow you to come and visit me in my dreams. When you do it is so, so vivid. I don't want the sun to rise those nights. It seems to sustain me. Please know you always have an invitation.

I love you Bubbe
Dad

Thursday, April 14, 2011 10:00 AM CDT

Dear Jack

We Miss you so bad. We have a great time in the wold. I hope you have a graet time in heaven and we miss you and we are goenig to set Ballons in the Sky and we are goening to go to color me mine and we are goenig to go do some color me mine. We are goeing to pait potre and we are goeing to set a rockit with notes on the rockeit to you today. And we pray for you. And we have a puppy and I got a new (Mario Brothers) game and we miss you rilley bad and mommy miss you. I miss you. Stormy (the puppy) miss you and Dad miss you. We all rilley miss you really badly.

By Cooper Corbo
3rd Angel Anniversary - 2011
Age 6 3/4, 1st Grade

Wednesday, April 14, 2010 8:42 AM CDT

We miss you, buddy. Our home is not the same without filled with your laughter. Heaven must be one heck of a playground! We love you, Jack. But we know you know…

Below is an excerpt that we wrote for a pediatric heart defect blog during Congenital Heart Defect month. Although Jack did not have a heart defect, the author thought our family’s journey should be shared with others who have heart-related health issues.


The Jack of Hearts

Your son’s heart is the size of an apple and it should be the size of a walnut, said the nice doctor who was called in to review Jack’s emergency echo in the step-down nursery of the children’s hospital where my ‘31-week’ twins were supposed to be “feeders and growers.” He may need a heart transplant.

I am staring, but it is not registering. The room is spinning. I am trying to breathe, but I can’t quite seem to get air in and out. I must sit down. I witness a flurry of activity as I can hear them talk about intubation, drug-induced coma. I feel like I am watching a scene from “ER.”

Fast forward more than five years and this drama moved from the small screen to the big and plays out like a feature film. The world kept spinning from that day on in 2004 and then abruptly stopped in April 2008 when my son, Jack, simultaneously mouthed and signed the words to me “All done Mama, all done” through his C-PAP mask when I arrived in his hospital room. No more. He was done fighting. No more cutting, no more fear. He wanted to have the last word.

So it was that day he earned his angel wings -- April 14, 2008. A day I will hate for the rest of my time on earth.

Press the reverse button on the DVD remote and rewind the story. What happened from that summer day in July 2004 to April 2008?

Jack was transferred to a new hospital after being evaluated as a candidate for a heart transplant. We learned that his heart was enlarged and not able to squeeze effectively. A conditioned called cardiomyopathy and likely caused from the viral infection I got while pregnant. He would either get better or need a heart transplant, whichever happened first, they told us.

He received an angel heart on October 17, 2004 at the age of four months after waiting 72 days on a ventilator. He smiled a big grin as they wheeled him off to the operating room to remove the heart that we gave him and place a new one in from a child who had a tragic ending. In a matter of six hours the world as we knew had changed completely.

They told us nothing about the angel heart-- not what happened to the donor child or where the heart was. We just knew the child had the same blood type as Jack and was somewhere around his size.

The heart did not function well from the beginning. We heard comments from the doctors that it was in “shock” from being “on ice.” We learned that the heart was out of the body for the longest amount of time possible for transplant. That meant the heart came on a plane ride anywhere from 4-5 hours to Minneapolis.

With the help of A LOT of drug support, Jack’s donor heart functioned adequately so that he was able to finally join the real world and be reunited with his twin brother, Cooper, at home for the first time at seven months of age (Cooper had no health issues).

It is amazing the healing effects that a loving home provides for children, both mentally and physically.

The years between 2004 and 2008 were spent making many happy memories, but they were not without drama. Jack had many up’s and down’s with his new heart -- more than half of his life was spent in the hospital (two Christmases, one Thanksgiving, one birthday). He needed a pacemaker as the natural pacemaker in the donor heart was really screwed up (his heart rate would get too slow, or he’d get SVT and require cardioversion). Then the pacemaker wires fell off. It was after his third open heart surgery that they told us he would need another new heart. This donor heart was not going to work. It was too stiff and there was nothing they could do to support it. No drugs to solve that problem.

Another experience where the room is spinning and I see their mouths moving, but I can’t make sense of what they are saying.

There was one big problem (as if being told your child has to endure another critical surgery isn’t enough), Jack’s surgeon (otherwise known as “The Witch Doctor”) said she wasn’t sure he deserved another heart. She thought he did something to the donor heart. Huh? Now, we had a contentious relationship with this woman from the beginning. It had something to do with everything about her. She was loud and a foul-mouthed bully. She was a bull in a china store. It was her way or nothing. She did not like to be challenged or questioned. I will never forget the cold stare of her beady brown eyes for as long as I live. To this day, I still question whether or not she really had a heart and I am certain that the devil does walk among us.

Her take was that maybe Jack had some congenital disease (like ALS “Lou Gehrig’s disease”) that did something to the donor heart, and if so, they are not wasting another heart on him.

After unnecessarily wasting the summer of 2007 battling with her, trying to get a second opinion of which she was not happy about, and ultimately trying to get Jack into another program in another state, she finally agreed to re-list him. Jack was able to go home with a PICC line in his arm that delivered life-sustaining medication. He was much weaker, could not walk without the use of a walker, and his fluid status and kidney function were always major concerns. But he was happy (can you believe a child with all this would be happy?) and reunited with his brother.

The witch doctor would not list him as a 1A (top of the list) unless he lived in the hospital. If he was going to live at home, he would be listed as a 1B.

Jack went to preschool with his brother (and a nurse), as we were trying to make life as normal as possible for him. He loved school! Even though he would get very tired and his tummy hurt a lot, he loved going to school.

We had a nurse come weekly to our house to draw labs as we needed to keep a check on the functions of his organs. The hospital wanted us to bring him in-patient so his transplant status could be upgraded to 1A and we get him a heart faster. His labs were starting to decline.

It was the second worst mistake of our lives. The first was going to the University of Minnesota Children’s Hospital in the first place. (At the time we went there, we were new parents, distraught, and didn’t know anything about anything.)

We thought we were making the best decisions for him. We trusted.

The intensive care unit where he resided was not the same as when he was a baby. The nurses were over loaded and forced to double up on critically ill children. They were forced to do more with less. It was awful. Attending physicians were visiting from other hospitals and were overloaded and it would take three days for them to get up to speed on the patient load.

Right after Valentine’s Day, Jack acquired hospital-grade influenza B and his PICC line was infected with another patient’s poop. It made him horribly sick. He suffered. He got so fluid overloaded that he no longer had a neck.

We knew we were losing him.

There is so much more to this story…the in-between details…like the surgeon accusing us of making him sick because we were run down, her downgrading him so she could go on vacation, but not telling us…

The day he died, they had decided to intubate him and put in chest tubes to remove the fluid that was building up around his lungs. Jack knew what they were doing and didn’t want it. He was fighting the intubation and biting the tube. He was done – “All done Mama, all done.”

On April 14, 2008, I held my son for the very last time on this earth. He was finally at peace. He didn’t look like my son as the extra fluid on his little body had changed his physical appearance. As day turned into night, I sat there holding him in the rocking chair where I had logged too many hours rocking him, as if I could somehow stop time and not face the inevitable. “Twinkle, Twinkle, Little Star” played on the CD player, over and over again. We knew we had to leave. We had to get home to Cooper. But how do we walk out of this room?

Some of the nurses had packed up Jack’s room and belongings and loaded our car for us. Our babysitter had Cooper, so it was just Todd and I.

The charge nurse came in to check on us. We were sitting in the dark except the light above the sink. She knew us from our long tenure there. We asked her to please make sure they treated Jack with dignity as they came to pick him up to take him to the morgue. We requested no autopsy. No more cutting.

And just like that we were supposed to walk out of the hospital with one less child in our lives.

Our loss, Heaven’s gain.

It was only three months later when we starting investigating things about Jack’s medical care and we accidentally learned his donor’s identity, Baby Richie. We learned he was three months old, also premature, and his “father” broke almost every bone in his little body. He had cigarette burns, damaged lungs and ultimately, brain damage from his “father” hitting his head against something. We learned more about his story when my Todd visited his mother in prison. She is serving out an 18-year prison term in New Mexico for her part in her child’s death. She told Todd about how her husband would shoot her with drugs while she was pregnant and beat her. He beat her up and that’s when she went into labor and apparently went into cardiac arrest at some point while she was delivering Richie. The day that Richie died at the hands of his ‘dad,’ she was out asking family members for money. Her husband was at home alone with Richie and getting high. According to the police report we were able to obtain, after he found Richie not breathing, he went outside to bum a cigarette and smoke it before he came in and called 911.

The New Mexico district attorney described baby Richie’s abuse as “tortured.” It wasn’t just your normal case of child abuse, it was torture.

We told baby Richie’s mother and her parents, who were the ones to ultimately sign the papers for organ donation, that little Richie’s heart received an abundance of love while it was with Jack.

Baby Richie’s ‘dad?’ He hung himself in jail while awaiting arraignment.

We now know why Jack’s surgeon didn’t want anyone else getting involved with his case.

We are currently involved in an investigation into Jack’s care. We have involved our Governor’s office, state senators and the Office of Medicare/Medicaid, who found the U of M program to have deficiencies. If we have to do it one family at a time, we will make sure no other family will endure what our family did at the hands of the transplant team.

What advice can our family share about our journey in healthcare?

• Advocate for your child. Speak Up!
• Don’t leave your child alone at the hospital. You know him best and you need to be there
• Know that you are the most important person your child’s healthcare team
• Get a second opinion WITHOUT the aid of the current doctor. Have it be completely objective
• Talk to other families whose children have been operated on by your child’s prospective surgeon.
• Take notes and write it all down. Have a third party with you when discussing your child’s plan of care. You are stressed and might not hear everything you need to.
• Don’t be afraid to have people removed from your child’s medical team, but know it could be an uphill battle.
• Sometimes traveling out of state for your child’s medical care is the best option. It is just a small amount of time in exchange for the best care.
• Check the medicine that is being administered to your child in the hospital.
• If you are headed for a transplant, get informed. Seek out people who have been down the road. Don’t just speak to the people that the hospital suggests. Be armed and informed! Transplant and listing is a complex system!
• Question, question, question
• Take lots of pictures in the hospital – the good, the bad and the ugly. Hopefully, it’s to show your child how absolutely remarkable he/she is and what he/she has already overcome at such a young age!

Sunday, April 4, 2010 9:35 AM CDT

Cooper at the WWII Memorial



Cooper tracing his Grandpa's name from the Vietnam War Memorial.


Jack, also known as "Jack Rabbit"

Wow, it’s been a few months since the last post. My fault. There has been a lot of events that have just caused time to speed by and these past months have been difficult for us as a family. First, the Army has called me to active service and I am serving a one year tour as a JAG officer with the First Infantry Division at Ft. Riley, Kansas. We're about a quarter of a way through this tour right now and it’s going fine, it stinks being away from the family but it has given me an opportunity to reflect -- get back into shape emotionally, physically and spiritually. I also feel I am doing what a soldier should do when his country is at war and need him. As you know, we’re all a work in progress and this has provided me an opportunity to rebalance. I get home quite often though and Robin and Coop are constantly on my mind. We Skype almost every day that I’m not home.

Next, we have been approved and are now just waiting to adopt a child. We are hoping for a domestic, open adoption;so now we are in God’s hands and waiting for an expecting mother to find her way to us.

Finally, we continue to work for some justice for Jack. That progress has been slow and painful, but we don’t give up and will continue to work on it. We have started to turn our attention towards writing a book about our experience and the many lessons our angel son gave us. We think that would not only be a cathartic experience for us, but would bring joy to Jack also. We also think this is more of a positive manner in which to bring the attention to the world that Jack’s story deserves.

Cooper continues to be our source of strength and just a plain ol’ barrel of fun. He’s more than half way through Kindergarten now and seems to be quite popular with the ladies there. We just got back from Spring Break, where the three of us went to Washington DC and bummed around looking at the sites. It was fun and good to be somewhere different with no agenda to follow.

For all of you that keep up with us and continue to send prayers, bless you and thank you. We feel them and appreciate them. Largely through your prayers we have started to heal and find our new reality. We have also grown through some of our anger and have started to see the joy God provides us with every sunrise. As He personally has shown us today as we celebrate the Good News.

Happy Easter!

P.S. As you know, the dreaded anniversary of our loss and Heaven's gain is approaching. We will make a new post on April 14.

Monday, November 23, 2009 1:22 PM CST

Okay, sorry, it's been over a month since we last updated and life just doesn't slow down.

We continue to work on Justice for Jack, nothing new to report right now, but things are in the works on several fronts.

We held the second Adopt A Highway clean up a few weekends back. It was fun and it so great to see Jackers' name on the sign every time we go into the neighborhood.

There are two big news stories for the Corbo family at large. This is just a primer, as Robin will probably have more and better info later, but the first big story involves moi...

The Army has decided that I'm needed full time, so they are activating me and sending me to Kansas for a year. Kansas isn't bad, there are more dangerous places in the world to go. My one year deployment will start sometime after the first of the year, we have not received orders so we don't know yet. We are trying to decide how to keep everything going and who will live where during this time. The base is about 8 hour drive away, so its doable in one stretch. We're working on the logistics, but I'll be activated with 12 other troopers from my Army Reserve unit so there should be plenty of opportunities for communiting back home.

The next big news story is our family has finally been approved and is currently on the waiting list for an adoption. We are trying to adopt a child! Yeah! We are in the domestic, open adoption program and are praying that God will put us in touch with someone who would like us to parent their child. We need prayers, but we do have our ace in the hole, Jack, who is pulling strings for us too.

Like I said, this is a quickie, more to come.

TTFN

Friday, October 16, 2009 2:01 AM CDT

Jack’s Would-Be 5th Anniversary

Five years ago in the Southwest, a so-called “father” tortured his three-month-old son, Richard, to brain death. He broke nearly every bone in his body (arms, legs, ribs, fingers), burned him, shook him, and left him for dead. Even in his drugged state, this ‘father’ realized Richard was no longer breathing. He went outside, bummed a smoke and then came back inside and decided to give Richard CPR, and then called 911.

Baby Richard’s heart stopped a few times, but the paramedics were able to get it going and fly him via helicopter to a larger city’s trauma center. But to no avail, baby Richard was damaged beyond repair.

Baby Richard had been enduring ongoing abuse during his short three month life. He was subjected to drug use while in utero, as his ‘father’ injected his mother with drugs. He arrived in the world at 27 weeks when his father beat his mother; she went into labor and nearly died.

To hear baby Richard’s grandmother tell the story, he became an angel on October 16, 2004. It was that day at 5 p.m. that his grandmother, who now had legal custody of him and his two-year-old brother, decided to donate Richard’s heart and his liver -- the only apparent organs that could be donated.

At 3:30 a.m. on October 17, 2004, the phone rang at our home and the U of M’s pediatric heart transplant coordinator, told us that a heart had been found for our precious Jack. The coordination began to transport baby Richard’s heart from New Mexico to Minneapolis.

October 17, 2004 changed our lives forever. The University of Minnesota never informed us of the questionable nature of Jack’s heart donor. No mention of drug use, no mention of the heart stopping and requiring CPR, no mention of all the ribs surrounding the heart being broken. We assumed they had found a perfect heart for our Jack. We trusted that they would be looking out for Jack’s best interests. At the very least, we made an erroneous assumption that we would be informed.

We trusted. We failed.


Hanging with my brother in the hospital waiting for a new heart.

We allowed a group of hospital people roll our precious baby away, with his precious forever smile on his face, and take out the heart we gave him that had gotten weak and put in one that had been damaged.

We trusted. We failed.

It was three years later, many hospitalizations, two additional open heart surgeries, pain and fear for Jack, a pacemaker, three million dollars, and the U of M tells us that Jack will again need a new heart. But, there was one caveat. They blamed him. They said he did something to his heart. Robin had to sit there in the hospital with the devil herself while the bitch told her she wasn’t sure Jack deserved another heart. We didn’t know what we didn’t know except to say we knew something wasn’t right. We hated these people, but we were stuck. Jack was sick and they were not willing to help us find another program. They were going to sabotage every attempt we made at going to another program. They were not going to tell truth about the heart they gave Jack. They were going to blame him and knew no other program would give him another heart when they are in short supply, if there was something wrong with him!

They made us beg to give him another heart.

They required him to check into the hospital and live there in order to get the highest status even though he was immunosuppressed --the most vulnerable of patients. He had a sick heart, but it wasn’t good enough, they wanted him in the hospital. That way they could make more money off of him. They dumped us there and they didn’t communicate with us. They downgraded him at every whim, never told us.

Then he got sick. His central line was infected with another patient’s poop. He caught hospital-grade influenza B. He was sick and he suffered.

We trusted. We failed.

We had to let him go. April 14, 2008 changed our lives forever.

Then we found out the truth.

They lied.

We went to New Mexico. We went to the prison where baby Richard’s mom is serving out an 18-year sentence for his death. The ‘father’ – he hanged himself in jail while awaiting arraignment. Baby Richard’s Mom and her parents told us the whole story about what happened to baby Richard.

We spoke with the DA who prosecuted her. We got a copy of baby Richard’s autopsy.

We found out how many hospitals turned down Baby Richard’s heart first before the devil herself accepted it for our Jack and decided against telling us the information.

We thanked Baby Richard’s family for their gift of his heart. We told them how much love his little heart received and what a happy child Jack was. We think it gave them some comfort.

We will never stop telling our story. If we have to share it with one family at a time, we will make sure unknowing families who are about to put their trust in the University of Minnesota Children’s Hospital and their heart program, know the facts and review the evidence.

We found out a lot of information. We have all of the reports from the investigation that Medicare conducted and the deficiencies cited. We have evidence in writing of answers the U of M gave us and the real answers they told to Medicare investigators.

When you have medical personnel lying and sabotaging the lives of children, how much lower can you go?

We trusted. We failed.

We will not fail again. We will not quit. We will bring Justice for Jack by making sure other children are not hurt by the egos of unethical doctors and hospital administrators at the University of Minnesota Children’s Hospital.

October 17, 2009 – Happy 5th Anniversary, Jack. You deserved better than what you got and yet, you lived life with a smile on your face.

We know that Baby Richard and our precious Jack became fast friends in Heaven. Two kids and a heart, tied together forever.



Oh, how we miss that smile.


Two precious babies. Your brother misses you.

Friday, October 16, 2009 1:50 AM CDT

"Jack’s Would-Be 5th Anniversary"

Five years ago in the Southwest, a so-called “father” tortured his three-month-old son, Richard, to brain death. He broke nearly every bone in his body (arms, legs, ribs, fingers), burned him, shook him, and left him for dead. Even in his drugged state, this ‘father’ realized Richard was no longer breathing. He went outside, bummed a smoke and then came back inside and decided to give Richard CPR, and then called 911.

Baby Richard’s heart stopped a few times, but the paramedics were able to get it going and fly him via helicopter to a larger city’s trauma center. But to no avail, baby Richard was damaged beyond repair.

Baby Richard had been enduring ongoing abuse during his short three month life. He was subjected to drug use while in utero, as his ‘father’ injected his mother with drugs. He arrived in the world at 27 weeks when his father beat his mother; she went into labor and nearly died.

To hear baby Richard’s grandmother tell the story, he became an angel on October 16, 2004. It was that day at 5 p.m. that his grandmother, who now had legal custody of him and his two-year-old brother, decided to donate Richard’s heart and his liver -- the only apparent organs that could be donated.

At 3:30 a.m. on October 17, 2004, the phone rang at our home and the U of M’s pediatric heart transplant coordinator, told us that a heart had been found for our precious Jack. The coordination began to transport baby Richard’s heart from New Mexico to Minneapolis.

October 17, 2004 changed our lives forever. The University of Minnesota never informed us of the questionable nature of Jack’s heart donor. No mention of drug use, no mention of the heart stopping and requiring CPR, no mention of all the ribs surrounding the heart being broken. We assumed they had found a perfect heart for our Jack. We trusted that they would be looking out for Jack’s best interests. At the very least, we made an erroneous assumption that we would be informed.

We trusted. We failed.


Hanging with my brother in the hospital waiting for a new heart.


We allowed a group of hospital people roll our precious baby away, with his precious forever smile on his face, and take out the heart we gave him that had gotten weak and put in one that had been damaged.

We trusted. We failed.

It was three years later, many hospitalizations, two additional open heart surgeries, pain and fear for Jack, a pacemaker, three million dollars, and the U of M tells us that Jack will again need a new heart. But, there was one caveat. They blamed him. They said he did something to his heart. Robin had to sit there in the hospital with the devil herself while the bitch told her she wasn’t sure Jack deserved another heart. We didn’t know what we didn’t know except to say we knew something wasn’t right. We hated these people, but we were stuck. Jack was sick and they were not willing to help us find another program. They were going to sabotage every attempt we made at going to another program. They were not going to tell truth about the heart they gave Jack. They were going to blame him and knew no other program would give him another heart when they are in short supply, if there was something wrong with him!

They made us beg to give him another heart.

They required him to check into the hospital and live there in order to get the highest status even though he was immunosuppressed --the most vulnerable of patients. He had a sick heart, but it wasn’t good enough, they wanted him in the hospital. That way they could make more money off of him. They dumped us there and they didn’t communicate with us. They downgraded him at every whim, never told us.

Then he got sick. His central line was infected with another patient’s poop. He caught hospital-grade influenza B. He was sick and he suffered.

We trusted. We failed.

We had to let him go. April 14, 2008 changed our lives forever.

Then we found out the truth.

They lied.

We went to New Mexico. We went to the prison where baby Richard’s mom is serving out an 18-year sentence for his death. The ‘father’ – he hanged himself in jail while awaiting arraignment. Baby Richard’s Mom and her parents told us the whole story about what happened to baby Richard.

We spoke with the DA who prosecuted her. We got a copy of baby Richard’s autopsy.

We found out how many hospitals turned down Baby Richard’s heart first before the devil herself accepted it for our Jack and decided against telling us the information.

We thanked Baby Richard’s family for their gift of his heart. We told them how much love his little heart received and what a happy child Jack was. We think it gave them some comfort.

We will never stop telling our story. If we have to share it with one family at a time, we will make sure unknowing families who are about to put their trust in the University of Minnesota Children’s Hospital and their heart program, know the facts and review the evidence.

We found out a lot of information. We have all of the reports from the investigation that Medicare conducted and the deficiencies cited. We have evidence in writing of answers the U of M gave us and the real answers they told to Medicare investigators.

When you have medical personnel lying and sabotaging the lives of children, how much lower can you go?

We trusted. We failed.

We will not fail again. We will not quit. We will bring Justice for Jack by making sure other children are not hurt by the egos of unethical doctors and hospital administrators at the University of Minnesota Children’s Hospital.

October 17, 2009 – Happy 5th Anniversary, Jack. You deserved better than what you got and yet, you lived life with a smile on your face.

We know that Baby Richard and our precious Jack became fast friends in Heaven. Two kids and a heart, tied together forever.



Oh, how we miss that smile.


Two precious babies. Your brother misses you.

Thursday, October 8, 2009 9:34 AM CDT

Jack, your Daddy misses you so much.

Your Mommy cries to hold you.

Your brother still has toys out waiting to play with you.

Please come home.

How can such a full house feel so empty?

Thursday, September 17, 2009 6:29 PM CDT

Wow, sorry, it's been a few weeks since the last entry and yes, I was a little wound up there. It happens from time to time.

It's been a busy few weeks. We took a trip to Parris Island, SC and saw cousin Brianna graduate from Marine Boot Camp. Coops had his first plane trip and thought it was the coolest thing in the world. He got to go up in the sky, closer to where Jackers is. He talked about Jack quite a bit on the trip and how much he would have liked it also. When we landed in Atlanta, after the first leg of the trip to SC, we were taxing to the gate and it was dark outside. Coops looked out the plane window and saw these guys guiding the plane along with flashlights with orange cones on them. He stood in his seat and announced to the plane, in a loud voice, "wow, they have light sabers here!" (He's wathed Star Wars lately.)

We ended up renting a home on Fripp Island, about 20 miles from Parris Island and shared it with Cousin Brianna's family. Cousin Hope was there also, who is also five years old, and Coop and Hope had a fabulous time. Fripp Island is a gated community and you need a pass to get on it. Also, automobile traffic is discouraged and most people get around the three mile long island on foot, bicycle or the favorite mode of transporation being golf cart. Hope and Coop had a great time exploring the Island on the cart. Cousin Brianna, all spiffed out and looking fit to fight after boot camp, joined us after the graduation ceremony. She spent some time exploring the wonders of civilian life again (brought back memories from 24 years ago for me) and enjoyed some good old fashion food!

On the Island we saw dolphins playing in the bay, domesticated deer feed from your hand, heard, but did not see, tales of alligators and best of all, the kids went crab fishing and caught some blue crab. We steamed them up that night and tried our luck in fixing this delicious meal. The end analysis on the crabs is that we are novices and will do better later.

We flew home and spend Labor Day relaxind and preparing for the big day - the start of Kindegarten! Bittersweet is not too strong of a world, as Corbo Boy #2 entered his classroom and sat at his table and started his education career. Corbo Boy #1 was there also, sitting next to his brother guiding him along, all our senses told us that except for our eye sight.

Coop loves school and last weekend woke up quite upset when he found out that he couldn't go to school on Saturday or Sunday. He's quite the social butterfly and has already made many friends.

That's about it for updates for now, lots of news is coming down the pipe, stay tuned.

Monday, August 24, 2009 3:01 PM CDT

I was raised to have an ‘open mind’. My father once placed actual bull horns (mounted on a plaque) above my bedroom door to personify the level of ‘bullheadness’ I typically displayed (I was a teenager, come on…) However, here we are, several decades later, and those messages that were drilled into me formed a core value and yes, I have been able to be open minded on issues and make judgments according to the merits of the case. This value has served me well throughout my life and I hope to pass it along to my children.

This doesn’t mean that you’re a patsy and just accept a statement or decision from someone without serious thought. To the contrary, this means you take those statements or decisions and match them up to your values and beliefs and judge for yourself. If the utterance from this other person matches your values or presents a viewpoint not considered or has specific merit, perhaps you change your mind. However, if this utterance is contrary to your values and is void of logic and substance, you disregard it and stay with your mindset. If there are ramifications, you fight that decision to change it to what you want and need, measured always by a cost/benefit analysis. Some may call this a pragmatist’s point of view…I don’t know…but it’s served me well these past 42 years.

When you are blessed with children and God gives you this awesome responsibility you have to make decisions for them, especially when they are young. All of a sudden the equation changes again on you, decisions you made for yourself were easy because it only affected you. Now, you are making decisions for this young, helpless little person who relies on you for absolutely everything. These decisions will often have ramifications for decades into the future, shaping the very essence of what this child is to become. The future of this person rests with you. And you will be judged on how well you make these decisions. By family, friends, peers, providers, all mere mortals who are also full of fault of their own. But ultimately you are judged by God with the decisions you made for His child He entrusted to you. You better judge right. All of a sudden these decisions that you made for yourself, in no time flat, require some thought and reflection. Sometimes these decisions will decide between life and death. Sometimes you don’t have more than a few seconds to make it.

You look and you see this little child, something that you love more than life itself; this little child that you would die a thousand painful deaths for every second from now until eternity in order to relieve his pain and you have to decide…knowing this decision will be with you, in your conscience, until the day you are judged yourself by Him. And then you decide. You decide based on your life experiences, your knowledge of the situation, your values, your love for that child and your love for your spouse and family. And you do this in a blink of an eye and you know it was the right decision.

We have had to make those decisions many times for Jack. We relive them every day, especially the decision to let him go. At that time, considering everything he was in and knowing his desire the best we could, we know in our souls that it was the right decision. However, when the premises for making some of those decisions leading up to that point are all of a sudden retroactively change. When the facts you relied upon prove to be false, or mushy, or half-truths, or filled with someone else’s agenda or outright lies, then you have two choices, again falling back to those core values you are taught as a child and some of those basic instincts hard wired into all of us humans: Fight or Flight.

We don't have wings.

Currently, the President and the Congress are all pushing for health care reform. The propositions being put forth are complex and ever changing. The thousand pages of the various bills haven’t been read by those voting on it. I have my views on this entire mess, however one point that seems to cut through it all is the idea of a ‘impartial panel’ of ‘experts’ making decisions on health care for someone else. HR 3200 Section 1233 has a provision called the “Advanced Care Planning Consultation” which makes these critical decisions I mentioned above based on the ‘level of productivity in society’ of the patient. This is pure evil. It is putting those decisions I mentioned above in the hands of a government actuary and out of the hands of those who are responsible. It takes decision making away from parents for their children. (Or, for older citizens out of their own hands.) In a way, not to sound too grandiose, it attempts to take the role of God away from Him and give it to the US Government. This provision could be easily stripped out and the controversy quelled, however, it is only indicative of what lies at the heart of anything being collectivized into the government’s hands. Since it is impossible to provide all things to everyone (there is not enough money in the world to tax to cover everything for everyone), control over costs must be asserted. The only means Government has at its disposal to do this is to ration care (through limitations or restrictive access). There creates an incentive to give this vital commodity only to those that will thus benefit the collective the most by it…those that are the ’most productive’.

Section 1233 is for end of life decisions, but this issue is raised throughout the lifecycle of any person for any type of ailment.

So instead of the individual designated with these awesome responsibility making these decisions, based on those values taught to him or her and knowing they will be judged by God for the results, are we really willing to give this up to a faceless, soulless committee to decide based on the subjective belief of an individual’s future productivity value to a squishy concept of society?
There is a reason why Jesus’ teaching were about ‘individual’ responsibility. I have yet to find a passage that provides our souls an escape hatch on Judgement by abdicating our responsibilities to Ceaser.

I wonder what this committee’s decision would have been on the value of Jack’s life to society? Would it have differed from the first to the second heart transplant? We probably would not have been told.

An unethical doctor with an agenda, a narcissistic nurse and a corrupt 'government' organization conspired to make Jack's decisions for him. They did this all under the guise of what was in 'his best interest' and 'what was best for the system.' Actual words during actual exchanges. They did this all with a straight face, spouting off statistics, medical jargon and righteous indignation if a contrary opinion was dared to be put forth. (e.g. "you need to consider what is best for your whole family before you even think about moving Jack to St. Louis" - Narcissistic Nurse to me - September 2004 while awaiting his first Transplant. As if I were twelve years old...also...as if the inconvience of separation was more important than giving our son a chance at life. Again, our decision, not theirs!) These same people didn't have the common courtesy to say "I'm sorry for your loss" the day our son died in our arms. Their only words to us after Jack's death were don't blame us after we found out the whole truth.

We fought and we continue to, so this instance doesn't happen again.

Fight or Flight, it’s time to decide.

Saturday, August 8, 2009, 11:45 a.m. CDT

It seems like the U of M is just plagued in wrong doing, doesn't it?

http://www.wctrib.com/event/apArticle/id/D99U9TK00/

If they lie about their research, what do you think they do about the care of the patients and the mistakes they make? Are you willing to gamble with your child's life? They can run, but they can't hide.

******************************
“What a Farce”

Well, we’ve seen it all now. Really…this is too much. Someone sent us an email today with a link to the University of Minnesota newly-updated transplant pages on its website. And, really…this is too much. Maybe it’s their sad attempt at damage control. Maybe it’s their sad attempt at misleading parents of patients who are under mental duress, exhausted and sick with fear over their suddenly sick child. But, seriously, how anybody involved in that program reads this BS with a straight face -- maybe they need to because it’s the only way they can look at themselves in the mirror? That is how the weak survive. Denial.

Here’s the new intro paragraph on the website:

“Welcome to the Transplant Center at University of Minnesota Medical Center and University of Minnesota Amplatz Children’s Hospital. Our goal is to provide unsurpassed care for anyone whose life is touched by a solid organ transplant. We offer the expertise of University of Minnesota Physicians along with the supporting resources you need -- all in a single location.”

**UNSURPASSED CARE** ~ IF you consider your transplant programs that were found to be deficient, both adult and pediatric, by the Center for Medicare and Medicaid, to be “unsurpassed care.” Well, I guess on one hand it is – credible, successful and ethical transplant programs in the U.S. aren’t deficient in their programs, so I guess that is unsurpassed in providing misleading information to the patients and parents, lying to cover your ass, downgrading patients and not telling them, and let’s not forget the BIG ONES – not allowing informed consent, giving a patient a bad donated heart that was exposed to drugs and CPR – AND blaming the recipient patient for the condition of the heart! Oh, and if you’re lucky, you can get a surgeon who downgrades your status while waiting for your second donated heart that is failing fast, so she can drink her pina coladas in Jamaica. Yeah, U of M – you give yourself one big pat on the back for that GOLD STANDARD! It’s all about patient care with them!

Let’s go on with the laughter… they go on to list the team members:

Heart Pre- and Post-Transplant Coordinator
**Paula Kofflin, R.N., B.S.N., C.P.T.C.
612-625-9922 or 800-428-5864
**The great pre- and post NON-EXISTENT transplant coordinator. The written investigative report from Medicare and Medicaid had to reiterate her job description to her. As they found she had no contact with us for two months while our son laid in the hospital, which THEY demanded, getting sick from being exposed to all of the germs. Let’s not forget she did grace us with her presence when CPR was being performed on him the day he died so she could tell us he’d have to be taken off of the list. Let’s see, that would only be if he were actually listed correctly!

Just in case you haven’t figured it out, you stink at your job! Try to end that nasty habit of lying to the parents of your patients – ok? We know you got a copy of the investigation, so read the part about your job description VERY CAREFULLY that way maybe you can get it right.

Social Workers
Cheryl Jacobs, M.S.W., L.I.C.S.W.
Dawn Larson, M.S.W., L.I.C.S.W.
612-273-3366

Social workers…? I suppose if you have any questions during the few hours that these people actually get to work with the transplant program, maybe you consider you have a social worker on your team. Our “social worker” wasn’t working the day Jack died or much of the time he was there. Nope – due to her reduced schedule. We never heard from her after he died -- no social worker on our team. But it looks good on the website, doesn’t it?
Feel free to give any one of these Team Members a call and leave them a message. We’re sure they would appreciate it.

You know who's missing from the website? The head of solid organ transplant, Barry Friedman. You know the saying when a fish starts to stink, it stinks at the head? You got it. He's the guy who was non-existent to us until our NBC affiliate started investigating the Peds Heart transplant program. Then he was all over it. The death of our son and $3 million later and now he wants to talk to us? Can you be any more greasy? Why is he non-existent to families? Because he's too busy to talk to the parents of the one to maybe two cases they do a year! We even have voicemail recordings from him telling us the U has to be careful with their answers to us because there is a lot of media attention on Jack's case! You mean be careful with how you lie? It's very interesting in the investigative report because Mr. Big, we mean "Barry" asks Medicare for clarification on informed consent. As in, "how much do we really HAVE to tell the patients?" Do we really have to tell them we are downgrading them so the surgeon can limbo on the beach? Greasy.

Yes, the investigative report that cited the University of Minnesota Pediatric AND Adult Heart Transplant Programs for deficiencies is an interesting read or scary as hell, depending on your perspective. We will be releasing parts of it soon. What’s really interesting is the written investigative report, which includes interviews with the key players involved in the pediatric heart transplant program and in Jack’s care, differs from the written answers that the U of M gave us to written questions we posed to them. So, who did the U of M lie to – us or Medicare? Well, Medicare/Medicaid is the U of M’s lifeline (no pun intended) but they could not survive without the funding from these government agencies (which does mean us taxpayers that's why these agencies hold clout), so you guessed it. They lied to us. Again. This time we have it in writing.

There are many more laughable tidbits on these newly-revamped pages, especially when they write about the 60 pediatric transplants that have been performed since 1981! Wow, then you take a look at the real pediatric programs that do 20 and 30 per YEAR -- couple that with the talking points that the U has stated in the Minneapolis media about being in a ‘geographically isolated region’ (doesn’t that Dr. Bobbi Daniels do a heck of an interview??) to get organs or that the organs they are offered are ‘often imperfect and turned down elsewhere.’ Are they telling that to parents when they take new patients into their program? Are they informing patients of this? They certainly didn’t tell us this! Nor did they tell us the origin of Jack’s donor heart. Do you think we would have agreed for him to have the surgery if we knew about what had happened to that heart? We had a right to know and make an informed decision on whether we wanted our son to take a heart with so many inherent risks given its condition. Why would we put our son through this only to require another heart 3.5 years later? And, then putting us through hell during the summer of 2007 telling us that they weren’t sure Jack “deserved” another heart. There are some things a parent will never forget and this is one of those defining moments for us. Our hope is that these people involved in the demise of our son and the cover up of the facts surrounding his “care” get the opportunity in their lives to experience the same. Let it be a life’s lesson for them. Maybe it will allow them to make amends in their own lives.

We must have a healthcare system that holds honesty, ethics and the patient’s medical best interests above all else. Would you want to go to a doctor or be a part of a program that lies to patients, miscontrues facts or withholds info? You should not be on a “need to know” basis with your child’s doctor.

We need to demand better of our healthcare. We are not only paying for it with our money, but with our lives, or in our case, the life of our son. If you know anyone or any family who will be facing a transplant in their future, please help them by sharing that there is much information and investigation they must do before they put their lives on the line in a bad program. Too many health centers want to do transplants because of the prestige and the ability to bring in money from donors, but that doesn’t mean they should. There is much discord within the transplant industry, as many well-established programs readily discuss programs like the U of M and that the fact that they shouldn’t exist because they don’t do enough transplants to run a good, thorough program.

As we said in the beginning…What a Farce!

P.S. Many thanks to so many of you who send us notes, referrals and alerts to important pieces of information. Much gratitude!

Friday, June 26, 2009 1:51 PM CDT

Happy 5th Birthday, ^Jack^ & Cooper! Your actual birthdays will be at 8:10 and 8:11 p.m., but we'll celebrate the whole day through!

You two are the greatest little beings to be bestowed upon two parents! We have cherished every moment each of you were and are in our lives.

Jack, we miss you more everyday. You lit up the world with your smile and your attitude. We feel your presence all around us, but we sure do miss you little buddy!

Cooper, you keep Mom and Dad laughing and have been a life saver for the two of us this past year. We so thankful to have you in our lives and proud to call you our son. We love you both!!

Some pictures of the boys, past and present:

Jack’s Adopt-A-Highway sign -- we will begin the boys’ birthday celebration by beautifying the community in Jack’s memory – like his presence did on earth and does in Heaven now.



Cooper and his cousin, Hope, who stayed with us for two weeks this summer. She is five weeks younger than the boys.



Cooper at graduation from the YMCA


Cooper’s graduation ceremony from Knowledge Beginnings Preschool - “Hello, my name is Cooper Corbo and when I grow up I want to be a cook.” Hmmmm. Where did that come from?


He is very proud of his preschool diploma!


Jack and Cooper’s last pictures together at home before Jack entered the hospital in December 2007, never to return to his earthly home again. We were putting up Christmas decorations and Cooper was annoying him – all in good humor. He adored his “little” brother.


This photo was taken at a holiday party in December 2007. Jack was starting to not feel very well and retaining more fluid.


Their last birthday (3rd) spent together


How do I blow into it, Mom?


Bring on the presents, guys! If only we could have found him a new heart!






*******************************
Friday, June 19, 2009

A week from today we will celebrate Jack and Cooper's 5th birthday!

Jack continues to be with us in our daily lives, but we are also tortured daily by the lack of his physical presence. This new reality sucks. We want our son back.

Cooper is doing well. He too misses his brother, but continues to troop on and reached a milestone in his life last week with a double graduation from both of his pre-schools! (We'll try to get some pictures posted.)

Cooper made the same speech at both graduations..."hi, my name is Cooper Anthony Corbo and when I grow up I want to be a cook." Not sure where "a cook" came from, probably has something to do with his fascination with foods, especially the ones from the desert genre.

Coop's almost five-year old cousin stayed with us for a couple of weeks and they had a great time. They played everything together and by the end of the two week period had come to be very close. Coop taught her how to drive his Jeep around the neighborhood, however no one is as good as he is. Seriously, he whips that Jeep around the neighborhood and then parallel parks it in the garage next to the new Murano and the "Black" car (Minivan) everynight. We went to Wisconsin Dells for a few days this week, which is where his cousin rejoined her mother. We had fun there and Coops actually ran out of energy for a few hours at night. Of course, we were well past empty by that time also! (Dad also got escorted out of the lobby by security, but that's a story for another day.)

Next Friday, on the boys' birthday, we will be holding a 'clean-up' day for the Adopt-A-Highway in honor of Jack. We adopted the road close to our neighborhood and proudly have a sign stating "Friends and Family of Jack R. Corbo" welcoming us into the neighborhood everyday. We have to pick up the trash along the route twice a year and this coming Friday will be our inaugural clean up. The theme of this party will be "making the community beautiful in honor of a beautiful life." Very fitting. If anyone is interested in helping, please email us.

That's about it for now, still working on the Justice for Jack campaign. Can't report on anything for now.

Monday, May 25, 2009 1:04 AM CDT

Memorial Day… thank you to my brothers and sisters in arms, especially those who loved us so much that they gave their lives for our freedom.

Tonight as we ate supper Coops was done early and ran to the door to the garage. On the back of this door, in our mud-room, we have pictures of Jackers, Coops and the Corbo twins together. As we were finishing our meals we heard him say aloud, in a voice clearly only meant for him and Jack to hear, “I miss you Jackers, please come home.” Earlier today Cooper asked me in the car, “Dad, when Jackers gets done in heaven, can he come home then?” I had to tell my almost five year old son that Jackers isn’t coming home. He’s in heaven and he’s staying there. I’ve told him this many times over the past 13 months and this time I added “Jack is waiting there for us to join him”, hoping it would help Cooper understand the permanency of the situation. You cannot outwit Coops, he replied “Dad, when I turn five can I go to heaven and see Jackers?”

As my eyes filled with tears, both over the fact that one of the seats in the back of my car is not filled with our son, and the fact that my little boy misses his twin so much that it hurts and he just can’t understand. I had to slow down to maintain control of the new car. The only answer I could muster was I hope you have to be 105 to go to heaven. “No Dad, I want it to be 5.”

I rolled over later this evening and looked into Cooper’s sleeping face and saw every feature of Jack. They are twins. It is so hard to see little Cooper running through life looking for a friend to play with knowing that he should have the most close of all possible friends right next to him, his one minute older twin. It just hurts to see the hurt, loneliness and frustration from not understanding in such an innocent life.

I just reconnected with a friend of mine from the 1st grade, when I was just a little older than Coops. I would never have thought that my life would have turned out this way back then. I wouldn’t trade one minute of all of this pain if it meant that Jack would not be in my life though. So, I guess I’m satisfied, it’s just reality really hurts.

We keep trying.

We have a birthday coming up soon! We’re thinking of something special for the boys, details to follow.

Wednesday, May 13, 2009 1:33 AM CDT

It’s been almost a month since the one year anniversary.

Sorry, its taken so long to update…but here goes…

We approached April 14, 2009 with a lot of trepidation. What are you suppose to do on the first anniversary of your son’s death? I don’t know, do you even set it aside or do you just keep going on in your normal activities? We decided to spend the day together, so we canceled all activities and were determined to just spend the day remembering Jack and talking to him as best we can now. About 9 AM I answer the phone and it’s the car repair shop calling about the Altima. “Mr. Corbo, I have some bad news for you, your car is dead, it needs a new heart.”

Yes, those exact words on that date!

He had no idea what he was saying, but whatever possessed him to say it hit a chord.

Well, it was really a blessing and we have a hard time saying that it wasn’t a message from Jack. For you see this phone call set off a series of events that day in which we went shopping for a car. All three of us went around and test drove cars, enjoyed a beautiful, perfect spring day and just enjoyed each other’s company. We then ended the day with something bright, shinny and new. We took an hour off to release balloons precisely at 3:16 pm. The balloons went directly into the sun and Jack then caught them.

Jack was telling us that it was okay to go forward in life. It was okay to start anew. It was okay because he’s still here with us, just communicates through different mediums. All of our fears and apprehensions on what to do on that day were forgotten; he helped us once again come to grips with this new reality. Now don’t get me wrong, we’re not happy about car payments, which is minuscule compared to our unhappiness by not being able to raise Jackers. But nevertheless, the new reality is just a little easier to accept now.

Later that week Robin and I spent two days at an adoption seminar. We are in the process now of putting our application together and going through the home study. We want to do a domestic infant adoption and are open to an ‘open’ adoption. It’s something we feel strongly about. We still have something to give and we want to have a larger family. We also think Coops would make a great big brother and would really flourish with this. Jackers also has some additional capacity also to be a “Guardian Brother”. So, this process begins, pray for us and for a little soul to come into our lives.

On the Cooper front…after much consideration we have made the decision that he should be a kindergartener next school year. He had been watching Kindergarten Cop and feels he is ready based on his analysis. It was fun and exciting and sad and disappointing (that Jack’s name wasn’t on the application also), but we think he’s ready. He is more than excited and wants to ride the bus and have a ‘hot lunch’. All of these are points of to be discussed later as Mom and Dad come to grips with this.

Finally, our Justice for Jack campaign continues. We finally got a copy of the Centers for Medicare and Medicaid Services investigation of our complaint of the U of M. This was a compliant we sent to the Governor who then sent it to CMS for investigation. We had to file a FOIA request, but we finally got the final report and it plainly states that our complaints were ‘substantiated’. It lists the violations and demands a response, or else the U could lose Medicare reimbursements. They have filed a response and claim to be in compliance now, thus won’t lose funding. However, without getting caught up in the details right now, a couple of points to ponder. They are attempting to get the findings reversed and removed from their record. Why would you do this if it weren’t a big deal? Embarrassing? Also, we sent the same complaint (virtually verbatim) to UNOS. UNOS came back in a page and a half and said that it was unsubstantiated and that we couldn’t get any of the information on the investigation and referred us to numerous state statutes that were meant to convince us not to pursue anything further.

How can you get two different answers from the same set of facts? Only two answers to that question, the facts given to the investigations were different (thus there are some untruthful responses given to one of these parties) or one of the parties has a motive to have a different result regardless of the truth of the matter. They always say follow the money, I wonder where UNOS get’s its funding?

Mama and Papa Bear cannot rest.

More to come.

Tuesday, April 14, 2009 7:34 AM CDT

Dear Jackers:

One year ago today we parted. You left this world and entered Our Father's kingdom. We are still here.

This year has been very difficult for us. We miss you so badly. Our sorrow, which seems to have no bottom, is only lightened by our knowledge that you are in paradise. That you are running, playing and having a great time.

We are a very lucky family. While you were here we all knew how much we loved each other. There was no doubt in any of our minds. Jackers, you are so loved, we knew you felt that, we could see it in those large beautiful eyes of yours. We knew you loved us, we could feel it in the way you called our names. There is nothing more a parent could truly want for their child.

You died in the arms of your mother, your beloved twin, earlier gave you encouragement and I had the high honor of speaking to you as you departed. You were bathed in our tears, and those tears continue to flow off our cheeks everyday as we remember you. I knew the moment your heart stopped, my hand was on your chest, that moment is burned into my soul as my dear son departed. Your face was not of pain or sorrow, but of peace. Finally. We all knew at that moment your trial had ended, you had been given the keys to heaven and our trial was just beginning.

We have dreaded the arrival of this day. We dread the arrival of 3:16 pm. We have spent countless moments trying to think what we should do. As the priest told us as we prepared your funeral, there is no playbook for this situation. You just do what you think is right. So, just as we did last year, we have sketchy plans, but largely we are leaving it up to fate as to what we’ll do. The theme that we tried to convey to our family and friends last year was a celebration of your life. We will try to do the same today. And buddy, have that baseball glove on, the one that I never got a chance to play catch with you with, at 3:16 we’re sending you a message in some balloons. Your beloved brother CooCoo will be releasing them.

Jackers, we continue here doing what we believe is the mission God gave us. Cooper continues to grow and get bigger. Every day is a new adventure for him. His wonder and excitement keep us going. Last week Mommy and I took him to the kindergarten round-up at our neighborhood school. We’re still deciding if we should enroll him this fall or next, but he was excited to be there. It was fun, until we were standing in the library looking at him knowing that you should be there next to him. The Corbo boys should be ready to enter school. It’s those should moments where we turn weak; where our yearning for you reaches critical mass and we shed tears of grief, just wanting our family to be whole again, but knowing that it cannot be.

You gave us such a strong example to live by. You provided so much love and joy. We hope you felt the same from us. We love you little buddy. We will always be your Mom and Dad and we will always try to be the best parents we can be for you and Coops. Walk with us buddy, until we can walk with you.

Love
Mom, Dad, Cooper

Saturday, April 4, 2009 7:12 PM CDT

"Donate Life Month"

April is donate life month. Have you signed your card and made sure your family knows your wishes? As much as we have learned about the lack of regulation in the transplant industry, it is still the only way for you to make an attempt to save another life or more, with your gift. Remember, you can't take your organs with you...and why bury them? Your heart could be pumping in the next generation�s Olympic gold medalist or a teacher making a difference in the lives of children.

April 4, 2009
Well, the dreaded month of April has arrived, no matter what we've tried to do to avoid it getting here. You can't go around it, you must go through it. April has arrived with a vengeance in our household. Mama has been in bed sick, really sick, for the past five days. It takes a lot to get her down, but the combination of exhaustion and strep throat did it. Dad also has something, probably well on his way to strep throat and Coop, well Coop only knows two speeds, sleep and 100 mph, but we think he's showing signs of sputtering out, too. The family that streps together, stays together.

Mama said the illness makes the pain of thinking about Jack just that much worse because she can only imagine what he felt like at the end. Maybe it is why she has finally been knocked down. She said that she knows how bad she feels with a heart that functions, so she could understand how our Jacker's was finally ready to say "all done, Mama, all done." There is one thing a parent will never want to experience and nothing is closer to pure torture and that is watching your child suffer. Those are images burned in our memories that we will take to our graves.

It is probably hard for you to grasp through the written word, but when we write about how much admiration we have for our precious Jack, we mean, true admiration. There was something so truly Heaven-sent in our little three-year-old Jack. How could someone who endured so much, have such a fun-loving zest for life? We wish the rest of us Corbo's could have one-quarter of what he had. He wanted nothing more than to spread his gummy smile and twinkle in his eye around to others.

There must have been some Heaven-devised plan for him to cross paths with the evil that existed at the U of M. Somehow, his life and his case must have meant to leave an impact on them. Really, even as I write this I find that hard to believe because the few sinister people involved with hiding his secrets really don't have souls so I'm not sure any Heaven-sent intervention could have helped? I think we would like to believe in the battle of Good vs. Evil, Good wins out. If nothing else, I truly hope the smiling, cherub face of our son haunts the dreams of the sinister surgeon and her lip-glossed, boot-wearin' sidekick.

We still continue to work hard on our campaign "Justice for Jack" and bringing awareness to the unethical actions of doctors and how to be your best healthcare advocate. Robin did a preliminary background interview with a national magazine. They received so many emails about Jack's story, they wanted to get the facts and follow the story. If this story should take off, we will certainly have a national platform to tell Jack's story and advise innocent victims about the black holes in healthcare. We also did an interview with an author for a book he is writing on unbelievable healthcare stories and he found Jack's story very compelling. Please, stay tuned, we will tell more about upcoming things when we are able. But, rest assured, we won't be quitting anytime soon. When things seem like they are quiet, it is usually the calm before the storm.

We would be remiss if we didn't mention that it is also Autism Awareness. Let us all be reminded of the thousands of children who struggle with this diagnosis to live the highest quality lives they are entitled to and many of us take for granted. Their parents struggle and fight tooth and nail to get therapies covered by insurance for their children that improve their quality of life. Many of these families must pay out of pocket to get these therapies because the insurance companies don't recognize autism as a diagnosis that has a cure. How have we sunk so low that we dismiss these children and adults and decide their quality of life is unimportant? Is life in the United States only valid for those that are genetically superb? Every child is perfect in their parents� eyes. I truly don't know how the CEOs of insurance companies sleep at night or go on extravagant vacations when their financial decisions are affecting thousands negatively. If only we had the answers. To the parents of autistic children and children on the spectrum, you are truly amazing, wonderful and dedicated parents. You are the center of your child's world and that makes them secure in their hearts. Please, if you know someone who has a family member with autism, tell them how amazing they are and offer them a lending hand.

We've learned that you shouldn't go through life with a catcher's mitt on both hands. You need to be able to throw something back.

More shortly...

The Corbo's

P.S. For those of you who Twitter, you can follow Jack, who tweets about his healthcare experiences and his family under the moniker (Justice4Jack) and Mama tweets about healthcare reform and other things as (Renegademama).

Tuesday, March 17, 2009 12:21 AM CDT

Wow, it's been a long time since I updated everyone.

First of all, this is an incredibly difficult time for us, as we think about what happened to our beloved son last year at this time. This was Easter time last year and Jack was on the upswing from the double infection, but it was to be followed by more infections and trouble with his heart until the pain went away on April 14. We are glad our beloved son is no longer suffering and no longer stuck in a hospital waiting. We are glad that he is free and happy and filled with everlasting love.

Our happiness for him though is overshadowed sometimes by our own grief. In our selfish moments we feel sorry for ourselves and the loss of the memories that will never be. We can’t create any more moments with Jack anymore; we only re-live the ones from the past. Suddenly our future has become our past and we grieve this transformation.

Coops continues to be our salvation. He lives with his own grief and constantly whispers into my ears, as he drifts to sleep every night, that he misses Jack and wants him to come home. I try to explain where home is for Jackers, but sometimes find myself wanting for an explanation myself. Coops is a perpetual optimist though, as most almost five year olds are, and his buoyancy, energy and natural curiosity keeps us entertained and busy. We continue to try and provide him the opportunities he needs to grow and mature and he is doing just great.

We hope to make a trip this year with him, his first on an airplane. Just not sure where yet, but he is really excited.

I don’t want this journal entry to sound as if we’re moping around all day. No, our grief may be deep in us, and while we don’t hide it when people ask, we go about our daily lives as usual. Mostly, we love to talk about our kids. We love to talk about and remember Jack and his antics. We did not let his medical condition define him while alive, and we aren’t going to let it define him in his memory either. We have found the best way to do this is to talk about him and explain who he was and what he brought to us. We are so proud of him. (Dido for Coops!)

One of the biggest areas of pride, and the most exportable trait, of Jackers was his optimism and drive. We seek to emulate this. One of the ways we have found to do this is to use his story to promote ethical consideration and reform in the organ distribution arena. Our efforts in this area are just beginning and, honestly, are evolving as we go along. Our Justice for Jack campaign is gaining momentum and lately has a few successes to point out!

First, Governor Pawlenty directed CMS (Centers for Medicare and Medicaid Services) to conduct an investigation of the University of Minnesota Children’s Hospital – Fairview after we sent him a complaint based on Jack’s treatment while there. CMS has issued a deficiency letter as a result of their investigation and gave the hospital a week to respond. The details of the deficiency and response will not be available to us until they are made public, probably next week. However, Robin found out that CMS has conducted other investigations on other transplant hospitals and found out that in those cases there were grave concerns on patient safety. These deficiencies, in those hospitals, resulted in an order to reform or face the risk of losing their Medicare and Medicaid payment streams; which is potentially a formula to shutter the doors and windows unless you comply. We don’t know for sure if that’s what’s happening here, but it does make you wonder.

We don’t want the hospital to shut down, but we do want them to cease performing pediatric heart transplants. They don’t have the expertise, they don’t have the infrastructure to support it and they don’t have an ethical administration to assure it’s done right. The U has had plenty of ethical issues through the years surrounding their transplant programs, it’s time to face the music that its part of the DNA there…a fish starts to stink from the head as my Russian friends would tell me. Would this hurt children? It would help children, because now this program serves as a giant roadblock to getting to other hospitals that do it right. Insurance companies, public and private, have a difficult time justifying paying for a hospital in Missouri when there’s one two blocks away that says it does the same thing. To circumvent this problem requires time, resources and usually a little political grease; all of which little kids and their stressed parents have little of.

Our success with CMS and Governor Pawlenty was met with a setback concerning our complaint to UNOS. UNOS sent us a reply to our complaint about the U’s pediatric heart transplant program. They stated they cannot divulge their investigations, but rest assured one was done and no substantive issues were uncovered. The letter was three pages long with half of it dedicated to citing legal authority why they will not divulge any information from their investigation and the only person cc’d was their legal counsel. Ok, big hint on what motivates them, huh?!? A couple of particular notes, first they stated that their investigation found that even if Jack was a 1A during the entire time he was waiting for a heart, he wouldn’t have received one. If you remember, the same organization, when asked a hypothetical by ourselves and KARE11 under a FOIA request, stated that someone with the exact same listing requirements of Jack would have been offered a heart two times during this time. Also, while we offered and made it a big point that we know Jack’s case is very factually complicated, therefore we were willing to travel, at our own expense, to UNOS and testify under oath on any questions they may have in regards to the issues we raised. In the letter UNOS stated that our complaint was so thorough that they didn’t need our testimony. Okay, we wrote the complaint and constantly have to refer back to notes and each other to verify facts. (We don't shoot from the hip, we shot straight with documented facts.)

Okay, the hypocrisy of UNOS is clear to everyone now. I think the actions speak for themselves, namely this is an organization for and by the transplant industry and not about the well being of any patient. They are not interested in doing the right thing for patients; they are interested in making sure their fiefdom is not threatened.

Here’s a few things to chew on in re: UNOS. First, this organization receives most of its funding from member hospitals. UNOS has been extremely reluctant to discipline any member hospital for not following its rules, even to the point where numerous deaths are reported and the member hospital had become callous and resentful towards UNOS’s inquiries. UNOS is made up of mostly physicians and other transplant healthcare workers who routinely migrate in between jobs at member hospitals, organ procurement organizations and UNOS itself. There is a bias not to allow any outsiders into their board or governance structure. I could go on and on, but I’d refer anyone to an LA Times article written on 10/22/08 by Charles Ornstein and Tracy Weber. This well documented article pinpoints these examples much better than I can here.

So, what did you expect?, is the question we have to ask ourselves. We expected UNOS to put the patient and most particular, future pediatric patients, first. They have chosen to protect their own self interest instead. We’re not surprised. This is a non-governmental organization (although they do receive some of their funding from us taxpayers) and to expect any type of ethical or moral relief from them may be farfetched, but we gave them a chance. The trouble is this is the standard bearer most transplant professionals point to when talking to patients and their families. This is the standard bearer, as delegated by our Congress, to the process of organ procurement and distribution in America. This is the organization who is making policy that has and will increasingly affect who amongst us gets a second change in life.

Our opinion now on UNOS: heal yourself or quit. Ethics and Morality are as much part of the human experience as science is, we expect all three to be taken into consideration in these types of issues.

Also, you haven't heard the last from us.

We have many other avenues to achieving our Justice for Jack that are still open. And as I stated earlier, we are just starting and we are using the lessons Jack himself taught us to keep going. Is all of this fueled by the grief of the parents of a dead child? Those that believe that, don’t know us. Anger and grief will drive behavior in the short run, but the desire for Justice lasts a lifetime. Also, we don’t get anything out of this, our son is gone and nothing will replace that; this is for all those other sons and daughters out there.

More to come.

Wednesday, February 25, 2009 12:26 PM CST

Healthcare in America

President Obama spoke last night in his speech about healthcare in America and how healthcare reform must not wait. His references to health care reform included making "the largest investment ever" in preventive care, rooting out Medicare fraud and investing in electronic health records and new technology in an effort to reduce errors, bring down costs, ensure privacy, and save lives.
I think most of us would agree that healthcare reform in the United States is decades overdue. How did we get here? How could costs get so out of control?

The foundation of healthcare reform must begin with an ethical foundation. You cannot expect crooks to reform the system altruistically. They will simply reform it so that it continues to benefit them. We must help bring the stench to the top and out the people who are in it for themselves. When characters involved with the healthcare system are financially benefited by the demise or pain of others, the system is already cracked. This includes unethical doctors who make medical decisions for patients based on how it will benefit their careers/research/accolades and not the medical best interests of the patients. The same holds true for the CEO of an insurance carrier who is more concerned about the additional stock and bonus he’ll receive if his organization is able to cut the percentage of procedures covered for patients.

You can use our story as an example of an excessive abuse of the system. During Jack’s three-and-a-half-year life, we (or the insurance coverage we carried and paid for) paid out $3 million for his care. This includes care and medicine required to help sustain his bad donor heart. Remember, we were never told of the condition or background of the donor heart selected for him, so we didn’t know all of this at the time. We did not give informed consent for the heart he received and were not prepared for the consequences of it. We ended up paying for two additional open heart surgeries. The first one to attach a pacemaker to his dysfunctional donor heart and the second one to reattach the pacemaker leads which had “fallen off” of his dysfunctional donor heart.

We were thrilled to be able to pay for his needed medical care. We were so thankful to have the coverage to pay for his care, without question. We knew so many families who had easily lost insurance coverage due to the caps on their insurance coverage. Most families are unprepared to pay for medical care for their sick kids. Parents don’t anticipate their children will get sick. In a perfect world, they shouldn’t. And, why would you want to anticipate that?

What about a horrific accident? One mother wrote to us about her child being hit by a drunk driver. One criminal act by a thoughtless and careless person changed one family’s life forever, not only medically, emotionally, but financially, too.

Most people don’t know what the cap is on their healthcare insurance policies and hopefully, they never will. It seems the average is $1 million dollars; however, people hold policies that are a lot less than that. One extended stay in a hospital and you are one step away from going over the cap and headed for medical assistance/Medicaid. You also have to be a cost detective while in the hospital to ensure your charges aren’t being inflated and causing you to zip through your coverage even faster. Again, relating this to Jack’s story, he was required by the University of Minnesota Children’s Hospital Fairview to be in-patient if we wanted him to be at the top of the transplant list. This meant an average cost of approximately $4,000 per day. Prior to that, he was living at home on IV pumps delivering life-sustaining medications to his heart and helping it pump. He was able to be isolated at home, safe from other contagious patients, bonding with his twin brother and sleeping in his own bed. He had a once-a-week home health nurse visit to draw his labs, general vitals, answer questions, etc. Otherwise, we took care of him and loved every minute of it. All the while Jack lived at home with his IV and pumps, he did not have one line infection and we did all of the line changes, IV bags changes, daily vitals, etc. We were also required to purchase a $3,700 automated external defibrillator in case Jack should go into cardiac arrest. We did it all and loved that we could care for him.

The quality of life a three-year-old has with a central line in his arm wired to his heart and carrying a back pack with drug pumps in it is not the greatest, but we all made the best of it and decided it was not going to define his life. This wasn’t good enough for the University of Minnesota. They would not give him the best chance at getting a new heart unless he went in-patient. Well, we did what we thought was best and moved into the hospital. Four months later Jack was gone after getting his central line infected with another patient’s poop (have proof) and acquiring hospital-grade influenza B (have proof from Infectious Disease team). The worst of it all was that he suffered and his last four months of life were away from his twin brother. These are incredible regrets on our part that we have to live with for the rest of our lives.

We found out later it was not a policy rule on behalf of the United Network for Organ Sharing that a patient be in-patient to get a 1A status and thereby being put at the top of the list, as we were led to believe. It was what the hospital required. Remember, Jack still had private insurance and the hospital knew it because you have to prove how you are going to pay for your transplant and the associated care before they will even think about listing you. Thankfully, we live in the state of Minnesota where children are covered by medical assistance and those families who need it can get it, but it requires a lot of red tape and that all takes time. Hospitals don’t get nearly as much revenue for patients on medical assistance as they do patients with private insurance because they have agreed upon coverage costs with the state. However, Medicaid/medical assistance reimbursements to hospitals, especially a hospital like the University of Minnesota’s Children’s is a lifeline to them (NO pun intended). Having a program like that in jeopardy could severely harm a hospital’s operating costs. This is one avenue for parents to pursue when their child is getting substandard care or the actions of a doctor are unethical.

Our story ended badly and only got worse once we launched an investigation and discovered the truth about Jack’s “care” and the medical decisions made on his behalf, many without our knowledge, including the number of times he was downgraded to a status 1B without being told and we sat in the hospital for no reason exposing him to infections that ultimately killed him. That is why we will continue to tell Jack’s story to help illuminate both the unethical characters and the faulty system.

The much-talked about story of the Octuplet Mom is California is another example of how unethical medical practices can spin life out of control. The livelihood of these poor babies is on the shoulders of all of us now and they should be given all the medical treatment needed. However, it will run into millions for each baby and that’s just to get them discharged into a home environment (WHERE will that be?). Most, if not all, will probably require ongoing medical care and/or therapies. They should, and hopefully, will receive that care because they certainly had no say in how and when to be born. But, this is an example of unequal healthcare. These children were born as a result of the actions of a narcissistic and unethical doctor and the consequences are left up to society to manage (and again, I emphasize we should take care of these babies – they need us). But, how do you explain to a family that has a child who was denied a life-sustaining procedure because they can’t pay for it? How do you value one child’s life or another? How is one family penalized with the life of their child because of circumstances beyond their control and, yet another receives medical care for her children despite her intentional poor choices?

ETHICS are at the center of all of these questions.

President Obama, you may rightfully acknowledge that the US healthcare system must be reformed, but you must also acknowledge that the fish begins to stink at the head and we must first isolate the unethical doctors, administrators, drug manufacturers, and CEO’s and remove them from the system before we do anything else. You cannot build anything on a weak foundation. The structure will start falling down.


After trying to fight his line infection with all his might, he finally gave in. “All done, Mama, All done.”


Oh, how Jack adored his twin brother.


He found humor in everything.


Jack’s motto: Life is 10 percent of what you are dealt and 90 percent of how you deal with it. He had a smile for everyone.

Saturday, February 14, 2009 1:11 PM CST

February 14 – Heart Day

Today is Valentine's Day. It is signified by hearts. Heart Day. This day has so much more significance for us than the “normal” Valentine’s Day Hallmark holiday. You see this time last year, Jack was out with Mom delivering Valentine’s to all the nurses on the unit and Mom was talking about how ‘wouldn’t it be something if Jack ended up getting his new heart on Valentine’s Day?’ Jack was really happy and was pretty content even though he was forced to be in the hospital (OR so we would led to believe by the University of Minnesota) in order to get the required 1A status that brings a donor heart faster to a patient with limited time.

Well, aren’t we the fools? Little known to us we were living a lie. You see we learned through our investigation this past summer that the evil transplant coordinator neglected to tell us that the evil surgeon was going out of town so Jack was downgraded to a 1B. He wasn’t going to get a heart that day. His position on the national list was secondary to the evil surgeon and evil transplant coordinator wanting to go out of town for their Valentine’s weekend. It was beneficial for them NOT to tell Jack’s parents because why would we have spent that weekend in the hospital? If the only reason we were hospitalized was for Jack to get the 1A status, according to U of M’s own dictated rules, not the rules of the United Network of Organ Sharing, why would we sit in depressing, dirty, germ-filled institution while they were off having fun? Anyone who has spent a lot of time in a hospital dealing with a chronic issue will attest that even a one-night reprieve at home is a gift.

Here’s why they didn’t tell us. They knew we would push back. They knew we would leave. The bottom line is we were a revenue source for the hospital. Why would they want to give us a break at home when they were billing our insurance approximately $2500 to $4000 a day? Many of the little patients at the hospital had long-run out of insurance and were on medical assistance. Three-year-old Jack Corbo meant money to them! He still had private insurance!

It’s all about ETHICS. You can’t listen to any media outlets without hearing the new buzz word “transparency.” Well – listen -- if you don’t have transparency between yourself and your doctor, you’ve got BIG issues – ETHICAL ones. You must tell your doctor the truth about your health and life style AND your doctor must tell you the truth about your care and the consequences.

The days are over where fully trusting a person in a position of influence or authority, like a doctor or surgeon, simply because that’s what we were taught. A rational thinker would believe why on earth would someone like a doctor lie? Well, it’s about her/him and no one else. It’s about furthering her career. It’s about getting what she wants. It’s about something that happened in her own life at some point that made her narcissistic. It’s about feeding her ego.

When we think about the time lost at home with Jack and all of us a family unit, it is sickening. It is something that rocks you to your core. The realization that people you trusted with your child’s life stole from you. And, it’s not only the act of the stealing, but it’s how they did it. And, it’s how they acted WHILE doing it. And, it’s how they made our son suffer.

Let me tell you about the strength of Jack’s mother. As Jack spent what turned out to be the last four months of his life away from his twin brother and away from our home that he loved so much, his supposed “transplant coordinator” (I am using this term very loosely because she didn’t coordinate a damn thing for us as far as we are concerned) did not come to visit Jack or us while he lived in the hospital waiting to find his SECOND donor heart. (Remember, he needed a second heart transplant because of the damaged heart they gave him the first time without telling us the background and condition of the heart and lying to us.)

You want to know the day that she showed up? She managed to get her butt out of her chair and walk in her high-heeled boots with her lips glossed up during the time 15 people were in and around Jack’s room performing CPR on him.

They were able to bring him back once. That was when the transplant coordinator told us she was going to have to take Jack off of the transplant list until he got a neuro-consult. They don’t ‘waste’ organs on vegetables.

Here we are standing in the hall right outside Jack’s door as he’s ready to leave us and we are ‘blessed’ with her presence so she could tell us she was going to take him off the list (at least THIS time she legitimately told us she was going to do it).

As it turns out, she didn’t need to take him off of the list, as he signed to Mom through his CPAP mask, when she arrived at the hospital that morning, “All done, Mama. All done.” Jack took himself off the list.



The strength of a mother is one who can restrain herself from wanting to backhand the evil transplant coordinator so her lip gloss is smeared across her face and she loses her balance from her high-heeled boots and falls on her backside.

But, Jack’s Mama Bear knows that what she wants to do must remain within the lines of the law. She will get justice for her cubby. She will give all of her attention to making sure no other little cubbies are hurt. She will give this issue the attention that she wishes was afforded her son’s life. She will make sure the Nursing Board receives a well-documented outline of what we’ve learned, complete with the supporting evidence we have.

She will make sure that people are reminded that when a fish starts to stink, it stinks at the head. How a hospital is administrated and how, or if, doctors are supervised, is at the forefront of the medical care a patient will receive at that hospital. Is it the budget that dictates the care or it is the needs of the patients?

That is strength of Jack’s Mama Bear.

Life Lesson: The rule of nature is you do not mess with a Mama Bear’s cubby.

So, when you hear the word ‘transparency’ being used in conversation and the media today, let it remind you of the transparency that must exist between you and your physician or your child’s physician. It very well may save your life or the life of your child.

Saturday, January 17, 2009 1:37 AM CST

MORE TO COME

Today is Valentine's Day. This day stands out in our memory for a variety of reasons, the most hurtful is today is one of five or six times that the evil coordinator at the U forgot to recertify Jack on the UNOS 1A list. She must have been in too big of a hurry to be with her lover. She was only responsible for assuring a little boy got the chance at life that he deserved. Jack sailed through four days as a 1B, when he should have been a 1A. He would have been offered a heart during this time if he would have been the 1A that he should have been, that we were told he was and was the whole flippin reason why we at that institution.

So, now we only can look at Jack's pictures. Our grief is replaced with anger. Jack suffered on two more months and then died. His twin brother is left without his life long partner. Our world continues to be empty.

She continues on her marry way though, apparently not a care in the world for the little boy whose life ended from her carelessness.

It's hard to be a Chrisitian sometimes, and forgive. Especially when you never hear anything from the creeps that hurt your child.

***********

were“Random Thoughts”



Copyright ~ Patruska Photography (Cooper)

If you knew you only had one day left with your child, what pictures would you take? Would you rush to take many different photos? Would you want them to be professional or candid? Would you make him/her change clothes?

Many times I’ve thought, I’d like to get the boys in this pose or that pose, and then I remember … no more new pictures of Jack. I thank God everyday for the pictures and videos we captured of Jack. When it’s all you have left, it’s the greatest treasure on earth.

The pictures you see here on the website are the only professional pictures we had taken of the boys. They were taken on Jack’s first post-transplant anniversary. His heart wasn’t working great so he was tired a lot. That’s why you see him sleeping in this picture. The picture of the three of us was intended as a keepsake for his first anniversary and was supposed to help us tell him his story of all the things he conquered. Now, we’ll use it to help tell Cooper all the stories about Jack and how much he helped Jack heal.



FLASHBACK MEMORY ~ They are the kind of memories that cut through you like a knife when you least expect it. I had a flashback to the worst day of my life and remembered cutting locks of Jack’s hair for keepsake. He had such beautiful, wavy thick hair. And, I wished we
had cut more.



We are making a lot of headway with our campaign for justice. We received some additional good news today from two sources. Two separate, but influential, groups spoke with us today on working with us on our efforts to highlight the consequences of unethical surgeons and poorly-administrated children’s hospitals. We are thankful to have their support.

Remember those kid games like Battleship? What was the lesson you were supposed to learn from the game? Never underestimate your opponent.
Here’s another one: Never underestimate a Mama Bear when someone intentionally
harms her cubby bear.



Coop continues to mend his throat. It appears he caught a bug because his chest sounds very congested and he’s coughing a lot, which sounds as if it’s pure terror on his sore throat. We have finally been able to give him some Tylenol with codeine so he can sleep (and so can we). He hasn’t eaten very much the past couple of days. Cooper doesn’t have a lot of reserve in the fat department. He’s been going around lately saying (when he’s feeling good) “Look at my muscles, Mom.” (He then holds up his stick-thin arms like a weight lifter and growls). I don’t know what’s funnier, his growling or the stick-thin arms he thinks are pure muscle.

Please keep him in your thoughts as he continues to heal. It’s a good thing we did get his tonsils out. The surgeon said his tonsils were taking up 65 percent of his airway so he is certain they were affecting his sleep. Did you know they also rate your tonsils, too? On a scale of one to four, with four being the worst, Coop was the proud owner of tonsils rated a three! We know he’s a high achiever, but we didn’t need him to have mountains for tonsils!



As always, we thank you for your thoughts and prayers and for joining us on this journey. We probably fall short of expressing how important it is to us that you all walk with us in support of our children and our efforts to prevent further wrongdoing.

It’s time for a change in American healthcare. We need to let the establishment know we are not going to allow poorly-administrated hospitals put patients at risk by understaffing, overloading nurses and not supervising rogue physicians who think they own the world. Patients deserve better.

We will do it one step at a time.

I’ll close with a quote I read recently that hits home. “You never know how strong you are until being strong is the only choice you have.”

Sunday, January 11, 2009 11:17 PM CST

“My breath stinks…”

Well, we survived our tonsillectomy. Barely. We seem to have this karma with hospitals or the hospitals have it with us, but Cooper’s surgery kept getting bumped later and later. He was originally early morning and then it was switched to 2:45 PM and he went in at 5 PM. The poor kid was so hungry. He kept asking to eat and it was hard to keep occupied from not wanting food. We led up to surgery day talking about all of the ice cream he could consume after his tonsils came out. That was serious business for Coop. Cooper has a sweet tooth. He’s a good eater and likes to eat, but he loves his desserts. Dessert is used as bribery for getting him to eat the things that are second or third on his list.

He was all prepared for his tonsils coming out. He got his ice cream bowls ready on Thursday night. He laid on the counter and then he told us maybe we should take them to the hospital with us. Here’s the evidence:

The ice cream bowls were lined up and ready to go…


He wasn’t afraid at all. On our way to the hospital, he got very upset when our path veered off to Children’s Hospital in Minneapolis and not the U of M. He wanted to go to the hospital where “Jack lives.” We explained that number one, he would never go to that hospital for surgery, and number two, he was going to the hospital where he and Jack were at as little babies. That seemed to pacify him.

Just checking the vitals


Waiting and waiting, trying to keep occupied. I am SO hungry!


I’m a little groggy post-op.


The hospital treated us very well. They knew our circumstances and that we were pretty jumpy. It was especially hard talking to the anesthesiologist about intubation. It just reminded us of Jack’s last day and the whole sorted horrible mess. The poor anesthesiologist was very nice and was tearing up, too. He said he had a three-year-old daughter and just couldn’t imagine. He gave Cooper extra special care as did the rest of the staff as they alerted us right away that everything was okay.

There were actually a couple of funny parts to our day. Cooper was being Mr. Big Boy and wanted to “handle” the situation by himself. So he was answering all of his questions. They were checking his ID bracelet and making sure the info was correct. He told them his name, with correct spelling, his address, his birthdate, and what they were supposed to be doing to him. They were very impressed with his answers for a four-year-old.

The funniest part was getting situated in post-op. He was crying and groggy and you couldn’t understand a thing he said. He was trying to tell us something and finally he got mad and said, “My breath stinks. I need to brush my teeth. I don’t want to get any cavities.” He was right – his breath did stink. He’s very good at brushing his teeth because Mama has taught him about nasty cavities and The Dreaded Drill. He got a play-dough dental set that lets you play dentist. You actually make teeth and then put gold play-dough in the teeth as the cavities. It comes complete with The Dreaded Drill and he loves playing the dentist. So leave it to him to wake up and tell us all that his breath stinks and he’s going to get cavities. The nurses were cracking up. He is one of a kind.

We had a couple of episodes of Cooper missing Jack. When we were getting ready to leave the hospital, Cooper vomited and then he started crying and said he missed Jack. He seems to associate not feeling well with missing Jack. He ended up vomiting six more times and never did eat anything that day. The ice cream bowls that were left out on the counter got put away until the next day. He made up for lost time. He did eat an entire half gallon of vanilla ice cream. Then he asked to go to the gym. He was full of energy. We had to force him to rest.

Today he came crashing down and he’s not feeling the greatest, but has managed a few jokes today.

Our two boys were and are very strong.

A few pictures from Christmas 2008…

Christmas party at his YMCA preschool class


Cooper and “Spike” (He was a little afraid of him…)

Thursday, January 8, 2009 11:22 PM CST

"Cooper-ism's"

We could use some extra prayers tomorrow for Cooper as we allow another doctor to cut on one of our kids. Coop will get his tonsils taken out and ear tubes put in. He thinks he understands what's going to happen. He is mainly focusing on the part where he's eating ice cream and popsicles all he wants.

This morning he woke up and got his ice cream bowls out and lined them up. He pondered whether or not we should take the bowls to the hospital with us...

He's been talking a lot about Jack lately. He has a very good memory and says, "Remember when Jack would ..." But, lately he's been making up stuff that never happened, but it's interesting to hear the stories.

Yesterday, he told Mom that he and Jack would go with Dad to 3M and it was dark and he would hold Jack close to his chest so he wouldn't be scared and then he would cover him up with a blanket. He often talks about how he took care of Jack, which he did, a lot. He was very nurturing to him. More so than you'd expect for his age. More than should ever be needed, especially at that age.

Tonight, Mama was crying and Coop asked her why she was crying and she told him she missed Jack. Cooper says, "Don't worry Mom, I'm here and I won't leave." Then everybody was crying.

If there is a doubt in any one's mind why we continue to work hard on our "Justice for Jack" campaign then all you need to do is hear a "Cooper-ism."

We won't stop until we shed light on the consequences of unethical surgeons, healthcare practices and poorly-administrated hospitals. If we don't protect the littlest victims -- what will they do to the rest of us?

Thursday, January 1, 2009 0:15 AM CST

Thank God this year is over!

As we turn the calendar, everything around us tells us to move ahead. But dammit, our son is in the past! Time moves in one direction and every second that ticks by is a deeper cut into our souls. The hurt, the pain, the sorrow the overwhelming sick feeling just grabs you. You are in an instant on your knees, sobbing, retching, asking God for one more touch, one more kiss, one more...

I look into the eyes of my son and see my other son. I look at a picture of my son and project his persona on my other son. I see the hurt in his eyes, the sense of loss and I want to make it better. I can't. I don't know how.

We miss our son.

Vengence may be the Lord's, but we will have Justice.

We will get Justice for Jack.

Someday, years from now, Cooper will ask himself the question did they fight for him? Will they fight for me? He'll want to know the whole story.

There cannot be any hesitation in the answer.

Someday St. Peter will require us to defend our petition to enter paradise and be with the Lord and be reunited with our Jackers. We must be able to say we fought for the children God entrusted us with. That we used all the talents and gifts given to us. That we were honorable and worthly guardians. We must be able to say we helped other children. Anything less is not acceptable.

We are a family of strong willed individuals. We will not fail. We will leave this place a better place.

Tuesday, December 23, 2008 6:47 AM CST

He's had a smile that it seems to me
(That would light up my world, still does when I look at the pictures)
Reminds me of childhood memories
(Life was so pure, so fun, optimistic and surrounded by love)
Where everything
Was as fresh as the bright blue sky
(like those bike rides, swinging at the park, Coops pulling the wagon)
Now and then when I see his face
(every night as Coops takes a bath, I look at the pictures hanging in our hallway)
It takes me away to that special place
(those nights where we put two tired, but happy boys to bed, looking
Forward to the next day’s adventure)
And if I'd stare too long
(I can’t help it, I am drawn in to that angelic face)
I'd know I’d break down and cry
(We do almost every day at some point)


O’ Sweet child o' mine
O’ Sweet love of mine
(Our Jackers!, Our boys!)


He's got eyes of the bluest skies
(big and blue and long eyelashes that drew you in)
As if they thought of rain
(Maybe not rain, but he loved his ‘bubbles’)
I hate to look into those eyes
And see an ounce of pain
(Knowing the pain is gone is the only solace we have)
His hair reminds me of a warm safe place
(The nerves on my fingertips still feel that hair)
Where as a child I'd hide
(Sometimes I wish I could hide from this reality)
And pray for the thunder
(The way they treated him!)
And the rain
(Our tears, because we miss him!)
To quietly pass me by
(It can no longer be quiet, strength and helping
Others are Jack’s legacy)

Sweet child o' mine
(Jack Robert Corbo)
Sweet love of mine
(Jackers, nee, nee)


Where do we go?
Where do we go now?
Where do we go?
(Stay tuned, we are following God’s lead here;
Guided by the example our son gave us and
Nourished by our own grit.)
Sweet child o' mine

Tuesday, December 16, 2008 2:45 PM CST

Note: Dec 20, 2008

One year ago tonight was the last night Jackers slept at Home. It has never, nor can it ever, be the same. We miss him so much.

********************

Justice for Jack update!

Thank you, the letter writing is campaign is starting to work. A combination of letters and utilizing personal networks has started to pay off. One of our Senators, Amy Klobuchar, has contacted us and is going to issue a formal Congressional inquiry to the Department of Health and Human Services. HHS is the federal agency that oversees UNOS. In addition, Art Caplan, who was the featured bio-ethicist on the KARE11 story on Jackers, has formally reviewed the documents and complaint we filed with UNOS on the University of Minnesota Children’s Hospital pediatric heart transplant program. Dr. Caplan gave a written, strong opinion that we (Jack) were treated unethically.

We continue to push through other elected public officials to demand that this be investigated and change made.
The reason why politicians are needed to effect this change is because UNOS has a long history of keeping their investigations private. The vast majority of Board members on UNOS are fellow transplant docs and surgeons, who have a vested interest in assuring that only the good news on organ donation is provided to the healthcare consuming public. This ‘good-ol-boy’ network has received numerous complaints over the years, some involving several deaths at member institutions as a result of poor administration and…get this…improper listing practices.

Sound familiar?

What has UNOS’s response been? Quite backroom deals, conversations with colleagues with a hand shake deal and who knows what else. The worse punishment this agency has ever given to a member hospital has been “confidential probation.”

Now, ask yourselves, if your loved one, your beloved child, needed to get a transplant to save their life, wouldn’t you want to know if that hospital had issues with compliance to commonly accepted standards in this medical field? Wouldn’t you want to know that a change in philosophy on how to place patients on the transplant list caused all those still waiting to be re-listed, in essence going to the back of the line, some patients losing years of waiting time? No one can say for sure how many of those who lost that time ended up running out of time…or just gave up.

Wouldn’t you want to know if a healthcare institution had troubles remembered to‘re-certify’ your child awaiting a heart transplant and that caused him to be downgraded on the list…and during that mistaken time, a heart became available?

If the simple act of hitting a couple of computer keystrokes would’ve been done, Jack would have been eligible for a heart. If he were a 1A like he should have been, and like we thought, he would have been offered a heart! He could still be with us! Cooper could still be playing with his brother! We would have to shop for Christmas presents for two boys, not ONE! How can we live with this knowledge? How can that thing that forgot to do this ministerial act live with themselves?

I encourage all to read the following LA Times article: “Transplant Monitor Lax in Oversight”, by Charles Ornstein and Tracy Weber, dated October 22, 2006. You’ll see that although it is hard for me to contain the outrage at times, all the above is true.

That is why we need the political support. We need to pressure UNOS to actually investigate and make their finding PUBLIC.

That will be a step towards Justice for Jack.

Please don’t forget we continue to believe that organ donation is the most sacred of gifts someone can give. It is wonderful that medicine has advanced to a point where these procedures are possible and in some ways routine. Our issue is the ethics surrounding the administration of the distribution of these organs and how some organizations are able to put money and ego above patients. We as consumers, citizens and God-fearing individuals cannot allow this to continue.

More to come…

We won’t sit still…

Thursday, December 11, 2008 8:02 PM CST

Just a quick update...

There will be more to come, but just a quickie...

Thanksgiving was fine, we spent it together and decorated the house and yard for the upcoming holidays. It was fun, Coop and I bonded outside doing man stuff. It was not fun, last year Jack was part of that bonding experience.

Mom and Coop are busy planning their own special time together - making cupcakes and cookies. Cooper is more interested in decorating them with frosting and eating them.

Our Justice for Jack campaign is going well. We continue to ask for support and more letter writings. We feel that if we can get that stage, we can make institutions change and provide a more compassionate, substantive service to patients. Better outcomes will surely follow.

I don't want to say too much right now on specifics. We'll keep pushing and update when we know things for sure.

So, I know this is short, but stay tuned, stay strong, keep writing and talking about Jack's story and keep praying. We'll get there!

Friday, November 21, 2008 12:27 PM CST

Please refer to journal history, if you want to read our past entry.

“One step at a time”

It’s been more than a week since the story on Jack’s treatment at the U of M aired. We have received phone calls and messages from some, all in shock and disbelief that an innocent little boy’s life was tossed around like a ball on a beach. It is truly difficult to find words that describe our feelings about this entire situation.

Jack taught us a lot in his time here on earth. Mostly, he taught us to laugh, and we still do. He taught us to love life, and even with this great big gashing hole in our soul, we still do. He showed us how to wake up every day and love another, and we still do.

Our relationship with the boys is very different now. Jack is not with us physically, but constantly on our minds and walks with us every day in other ways. His presence is felt and our love for him continues to grow. We all miss him. We will be together again someday.
Cooper is now the only child in the house. He has two parents fretting on him. He requires both of our attention. We think he is lost and looking for his new place in a world absent his brother. All three of us are still on this quest.

As we explained in our last posting, the story aired on KARE11 last week (it is on You Tube if you want to watch it or pass it on) was accurate and alarming AND only the tip of the iceberg. There are so many other aspects to it and sickening when you examine what has been going on in this industry, unwatched, unmonitored. It is an exceedingly complicated and long story, so to be able to tell it in short segments on a TV newscast never can do it justice, but we think Rick Kupchella did a good job getting the large points across. Even now, after six painful months of investigation, we are still finding out facts and tidbits. For example, some hearsay about doctors, NOT Jack’s primary cardiology team, having discussions unknown to us and certainly NOT communicated to us, that Jack did not deserve another transplant. How did this effect their decisions to medically treat Jack in his final days? Are you reading a common theme here? Are you wondering if the word “ethics” is lost in the shuffle?

It makes you wonder which if these doctors rise in the morning, look at the reflection in the mirror (IF he has one) and state with glee, “It’s good to be God!”
Everybody say it out loud as you read this: Ethics. Ethics. Where, oh, where are the ethics of these doctors?

As we alluded to in our past post, we’ve gathered a lot of our evidence through third party sources, which is why it has taken months to get the information. I think many people in the general public probably aren’t aware of how to file Freedom of Information Act Requests: this takes a little investigation to find the form and send it to the right person, but you quote the state statute that gives you the right to information that really is PUBLIC information, but at first glance, organizations like to tell you is NOT. For example, you call some place and request information and the receptionist tells you she can’t give it to you because it’s “state law,” that’s when you ask her to cite the law. We as a society are so used to hearing people answer “it’s against the law,” that we don’t challenge anymore. We just accept it -- like we accept a doctor’s answer as gospel rather than challenging it or asking for more documentation. Those days are over. We, the people, we must be in charge of our own healthcare.

Let’s talk a minute about the “White Coat Wall of Silence.” It’s the fraternity for MD’s (Robin has the real definition of what ‘MD’ stands for, but I really shouldn’t print it), that means ‘I’ll cover your arse, buddy, if you cover mine.’ It’s a pretty big wall to climb, but you can do it. We are -- one step at a time.

There are literally yards and yards of medical records on Jack, which document every bowel movement he ever had, and yet try to find documentation on his original donor’s heart. NOPE.

There is no documentation on his second opinion from St. Louis. We did call and talk to the physician in St. Louis and he stated that he didn’t write anything down. It was done by phone to Jack’s doctors at the U of M. He claimed, “it’s such a small community that we just talk, we don’t document.” The U of M did confirm that they made no documentation of this consultation and discussion. As you read this, do you find this incredible? You can’t do that in the legal field. You must provide documentation of all things, if nothing else, it covers your butt.

You can’t find anything on the U of M’s listing status requirements and how they match with UNOS’s. How can these events in Jack’s treatment not be documented, yet there are reams of records on his butt rash? It’s beyond maddening, and I have a feeling it’s not just Jack.

We continue to take steps to bring Justice for Jack. We want reform. Organ transplantation is becoming more and more common everyday and is now a universally-accepted step in a course of medical treatment. It will only get more common as time goes by with the help of medical advances.

Organ donation is a sacred gift of charity and needs to be continued to be promoted.

However, it seems that our science has outpaced our ethics again. The biggest issue we’ve uncovered and we know the general public doesn’t know, and neither do the taxpayers, is how the industry is not really regulated.

Who is UNOS? UNOS is a federal contractor, hired by the Department of Health and Human Services, to oversee the operation of organ distribution. But the problem is it is an incestuous organization. It is riddled with doctors watching over doctors. It is a membership organization – kind of like a fraternity. The transplant centers that UNOS is supposed to supervise for compliance also pays fees to UNOS, in addition to the money it gets from the federal government.

The LA Times did a lengthy investigation into the operation of UNOS and transplant centers across the country and found very disturbing information. They found that when, and if, UNOS actually sanctioned transplant centers, it was done confidentially. The public would not be able to find out. UNOS didn’t really want to harm the reputation of the hand that feeds it. Besides, those supervising UNOS are friends and colleagues of those running the transplant centers. They run in the same circles.

So, if you are referred to a transplant center as a patient, you would have no idea that the center had been sanctioned or fined for policy violations or for not performing enough transplants. Do you think that the center is going to give you full disclosure of something that has been deemed ‘confidential?’ It’s confidential for a reason.

Our purpose in bringing Jack’s story to the public is to bring reform to this system. This system receives taxpayer dollars, but no taxpayer input. Its actions are hidden. We have to stop this insanity.

We have written a long, detailed complaint to UNOS on the U of M’s inadequacies and documented violations in Jack’s case. We have asked UNOS to investigate and suspend the U of M’s program.

We believe it is best public policy for fewer hospitals to be allowed to perform these types of transplants, instead concentrating them in regionally superior centers of excellence. A hospital cannot maintain the infrastructure or surgical skills to perform these types of procedures on one or two cases every couple of years. The U of M admitted on camera that it is in “a geographically isolated area for organs.” The U of M should step aside and allow children to go to St. Louis since it is in the children’s medical best interests for a better chance of getting an organ by a long-standing, well-run program.

Post-transplant care can and is very superbly conducted at the U of M with their pediatric cardiology team. Jack was blessed to have two cardiologists on his side. The hospital administration still has a major issue with its budget and how it inadequately staffs the PICU and children’s floors, burdening the nurses with multiple patients requiring a lot attention, where these children are sent to recover.

We do know the letters/calls from those who believe in our cause have already had an effect. We continue to work with the media and have pointed our focus nationally now. We have made contact with several well-known talk shows that had no idea this kind of “cover up” was happening within this industry.

We can do it one step at a time.

Full disclosure of information and ethics should be at the foundation of our healthcare system period.

As always, we thank you for your support.

~The Corbo’s

Thursday, November 13, 2008 2:20 AM CST

A True Angel - meet Jack's Angel Donor, Baby Richard, held by his older brother. This picture was taken shortly before Richard was tortured at the hands of his father.



***So the question that everyone wants the answer to – how did we find out about Baby Richard? UNOS (United Network for Organ Sharing). We requested data from them on Jack’s listing history and on page 6 – right there for the world to read – Baby Richard’s information including region and location. The very organization that is responsible for maintaining the national list with anonymity spilled the beans! Let me write this again – we have written documentation from UNOS that identifies Jack’s donor – a vital piece of information for us and our investigation, which added many missing pieces to our puzzle, but a grave mistake for the organization. Now, it took some detective skills to find the family, the prison and the contact information, but there is nothing like a Mama Bear on a mission.***

“The rest of the story…where do we go from here?”

(It should be noted that the thoughts expressed here are our opinions based upon personal experience and evidence gathered through a thorough investigation.)

We wanted to thank all of you supporters who have emailed us with words of encouragement. This has been a very difficult journey for our family. Many of you have probably seen Part 2 of the KARE 11 investigative report titled, “Finding a heart the hard way.” The taped segment with us was filmed many months ago, shortly after Jack died and prior to us stumbling upon our donor information and getting answers from government agencies.

**A couple of important notations: It is not our stance that all of the doctors at the U of M are bad doctors. Individually, there are some very good physicians and surgeons; even a few doctors that are actually human or act human-like. There are doctors we would encourage others to see, if they were outside of the U's system. We sincerely hope that those physicians that we’ve had long-standing interactions with know that our words to them were sincere and our gratitude immense.

The nursing staffs of 5A and 5C, unit personnel and child life specialists were nothing but wonderful to our family. They work their butts off for little gratitude except the smiles and giggles they get from the precious patients. It’s a good thing the doctors have the nurses to tell them what to do and how to diagnose the patients. They and the patients would be lost without them. They are unsung heros. Many of them cried with us, counseled us, listened to our rants, massaged and soothed our child, bought him toys, and showed him great affection. These people left footprints on our own hearts.

If you asked us if we would ever go back to the U of M? No, thanks. A teaching institution is a difficult place to be a patient -- not that we'd ever be welcome, I'm sure. That is not to imply there aren't good, dedicated, hard-working, and ethical people in the midst of all of this -- there are. We are only qualified to share our experience and evidence about the Pediatric Heart Transplant Program and the staffing issues in the PICU and children's floor.

We are taking the administration to task with our fight. The administration needs to be held accountable for the actions of a rogue surgeon who was allowed carte blanche freedom to do as she pleased and a phantom coordinator who was non-existent during our lovely stay, and apparently, asleep at the wheel. It is the administration who is ultimately responsible. It is a fair supposition to state that the administration of a hospital can be far removed from what really happens on a hospital unit. Patient care simply becomes a line item in the budget – a cost center.

We believe the hospital should be sanctioned by UNOS as a surgical transplant center following an internal investigation of violations of policies and procedures. This does not mean that continued post-transplant care can’t be done at the Pediatric Clinic. The pediatric transplant cardiologist followed Jack carefully and always listened to us as his parents and we were appreciative of that. However, not only does she have a very heavy patient load, but she is close to retirement and probably wanting to be closer than ever after this investigative series is concluded…Where will the program be after she leaves? When she leaves she takes with her a wealth of experience. That is not easily replaced.

It all comes down to who’s in charge?

This is a very complicated story to tell. The content of the story is so complex and riddled with policies and rules. You add the veil of confidentiality to the mix and good luck trying to explain it to people who have no real understanding of the transplant community. But you know what? Every person who faces a transplant does so for the first time without experience. That’s why patient advocacy is needed to help patients and/or parents understand the system, patients’ rights, what to expect, how to cope, and life AFTER transplant is vital.

Since we launched our investigation beginning in May 2008, we have been fortunate to uncover much more evidence than when we first filmed our segment with KARE 11 and Rick Kupchella. Unfortunately due to television time constraints, some of the vital details were not able to be covered. We think Jack’s donor story is one that needs to be told. It leads to one of the most important issues of healthcare today: informed consent.

Patients and/or parents of patients can only consent to what is shared with them. Patients rely on ethical physicians and surgeons to offer full disclosure on the patient’s procedure, condition and diagnosis. If the physician knows, then the patient should know.

We were not told of the conditions surrounding Jack’s donor heart and they include:

• Drug and social history of the mother (confirmed street drug use by us with the mother and mother’s parents during pregnancy. Baby was exposed as a premature infant to marijuana, crystal meth)
• Down time of the baby donor (how long the baby was not breathing before help was called)
• Cardiac arrests and CPR attempts on this donor heart
• Ischemic time parameters (the amount of time a heart is out of a body and not pumping blood through it)

These are in addition to the physical trauma baby Richard experienced at the hands of his father: broken fingers, cigarette burns, former leg fractures, crushed ribs and hemorraged lungs and kidneys, and a fatal head injury.

There is no way that this information could not have been known to the procurement team sent from Minnesota to New Mexico since the police were at the hospital along with child protective services who were removing their other child, a two-year-old boy, from their custody. The night the parents (Reesha and Larry) of baby Richard were arrested drug paraphernalia was found in the home. Drug possession charges were filed, in addition to child abuse and endangerment charges. The mother also confirmed, as Todd talked with her face-to-face, but separated by a line drawn on the floor and with a prison guard standing by, that she would routinely be tied up and injected with street drugs by Larry. She also explained how she was beat into a coma at 27 weeks of pregnancy, apparently coded, and baby Richard entered the world by emergency c-section.

(note added after original posting - it should be noted that this coward of a man, Richard's 'father,' couldn't face justice and hanged himself prior to trial.)

Just so you know, we told the donor family how much love baby Richard’s heart received. We made sure to let them know how much Jack loved life and people and smiled at the world all the time. This information was very comforting to them. We also told them of our plan to purchase a path stone at a retreat lodge for families who have lost children with Richard’s information on it. It will be placed along a path of inspiration.

So, if the above unbelievable details aren’t enough, you factor in our experience last summer (2007) when it was determined that Jack would need to be relisted and the surgeon blamed him for the heart not working. Direct quote, “I think he did something to that heart.” In her desire to create a smoke screen and put us through hell, she ended up delaying in listing him again. We knew something wasn’t right, but we just couldn’t put our finger on it.

There is even more to tell about how we tried to leave…tried to take Jack to St. Louis…and how she fought us about trying to leave. Jack’s transplant cardiologist was the only one willing to help him get help elsewhere. But the program turned him down. Re-transplants are held against you. They want to know why the heart failed. Who at the U was going to tell the truth about the heart they accepted for Jack? It should be noted that we don’t really think the transplant cardiologists knew about the history of baby Richard. Jack’s most recent cardiologist was out of town when he got his transplant and we’re pretty sure the surgeon didn’t fill her in on what kind of organ was accepted. After all, she didn’t tell us, either.

She was a one-woman show. Some people like to think God is a woman. I’m certain he’s not.

The U of M banked on the fact that we would never discover the identity of the donor. Someone worked very hard at keeping us from finding one another. The donor grandparents sent us a letter and photos of baby Richard through their organ procurement agency expressing their desire to meet our family, including Jack, if we agreed.

We never got any of their communications. We were never told anything about them. Lifesource, our region’s organ procurement agency, told us that they received our thank you letter to the donor on May 4, 2005 from the U of M and passed it on the next day.

Baby Richard’s family never received our thank you letter and were told we did not want to communicate with them. How could that be?

Rewind to December 2007 when Jack went into the hospital (at a cost to us and our insurance of $2,500-$4,000 per day) to upgrade his status to a 1A and get this darling little boy who enjoyed every minute of his not-so-great, but let’s make the best of it life (nobody did it better than that kid), a perfect new heart.

How could we ever imagine that the surgeon and the coordinator would sink so low?

Anyone from the hospital who knew the Corbo’s knew if Jack Corbo was there, Mama or Papa Bear was close by. There is no possible excuse for NOT communicating any listing status changes with us; EXCEPT for the fact that they knew we would PUSH BACK.

Part 3 of this investigation is going to examine staffing resources in healthcare today.

During the course of our journey with Jack, we witnessed a paradigm shift in care and administration of the PICU. We went through three medical directors, three intensive care fellows, two pediatric department chiefs, Jack’s first transplant cardiologist and several experienced long time pediatric intensive care nurses. These were all good people. It was a loss to the unit and the hospital.

The surgeon left the hospital, the state and the region six weeks after Jack died. Sayonara.

We knew when he checked-in for Jack’s second listing disaster that the lay of the land had definitely changed…increased patient-to-nurse ratio, less bedside time. They were constantly sending nurses home and shifting them to other units. Some of the nurses, who got assigned to the PICU, and to Jack, were scared to death. One nurse sent from another unit was so thankful we were there to take care of him because she also had the child in the next room that was all alone, but had a trach with alarms going off. This poor nurse was out of her element.

And, why do we have a nursing shortage?

Do more with less! Do more with less! And, oh yeah, don’t forget to take care of the little kids, dispense multiple meds, change diapers, suction them, read them a book, blow them a kiss, and call a code. All in a shift.

It’s the changing face of healthcare, folks. The littlest of patients are affected too.

We are building a new website that we will direct you to shortly. It’s a website that can’t be censored or accidently taken down. It also allows us to post attachments and videos, etc. You’ll be able to view some of our evidence gathered about Jack’s case, watch the KARE 11 segments and other interesting tidbits. We definitely aren’t tech heads so that stuff doesn’t come easy to us.

We will be in touch with you all about the next steps in our campaign, “Justice for Jack.”

Please stay tuned. Don’t forget to watch “Part 3: Finding a heart the hard way” (if only we did).

Do you know how many times we've said why didn't we just take Jack to St. Louis when he was a baby. Why? Why? Those are the questions that are the hardest to live with. But, the same surgeon and the same coordinator highly discouraged us and negated the benefits of going there. We were new parents, exhausted and still in shock that we were being told our baby needed a new heart!

Outside Minneapolis go to http://www.kare11.com to view the segments.


Copyright 2008 ~ All Rights Reserved ~ Todd & Robin Corbo

Saturday, Nov. 8, 2008, 4 PM CDT

http://www.kare11.com/video/player.aspx?aid=87458



Tuesday at 10pm: Finding a Heart The Hard Way
Updated: 11/7/2008 6:02:41 PM

KARE 11 reveals allegations against the University of Minnesota Children's Hospital Transplant Center involving the care of its most vulnerable children - those waiting for heart transplants.

The U of M Children's Hospital is the only place in the Twin Cities where children can get a heart transplant, but our investigation reveals a program that appears to be in serious decline. They've gone from performing several transplants a year, to just one since 2005.

We find some of the sickest children were downgraded on the national transplant list, making it much less likely they would receive a new heart.

One child dies while waiting for a new heart, and another child was the subject of a medical intervention. Her family had to move her to another hospital 500 miles away to get the transplant.

Please join us Tuesday at 10pm for a Rick Kupchella investigation.

All Material Copyright 2008 KARE-11. All Rights Reserved.




**********************************
In just a few short days, months of hard work and heart ache will be released, as Jack will finally have a voice in what happened to him. We always knew that he was a little boy of purpose and determination. It was his combination of moxie and old soul.

Now we only hope we can do him proud.


I sure do miss you, buddy.







***************************************

Saturday, November 1, 2008

Friends...it's been a busy few weeks.

We went to Faith's Lodge in Webster, Wisconsin a few weeks back. It's a lodge meant as a retreat for families who have lost children. We went there not sure what to expect, as we had back up plans to go to Duluth and check things out there if it turned out bad. However, just a few hours into it all those contingent plans were forgotten. The place was beautiful and so restful. All three of us really had a great time, met other families in a no-stress environment and just enjoyed being unplugged from everything for four days. We want to go back.

Coops has been busy going to preschool and birthday parties. He has been having a lot of fun. Mom took him to a birthday party today at a gymnastics club and boy he loved it. Bouncing on trampolines and running around with his friends. Mom said all the other Mom's just raved about Cooper, saying their children always talk about him and call him their "friend". It's nice to hear.

However, Coops has been sick during some of these episodes. While at Faith's Lodge he developed a pretty bad ear infection. So, in Corbo tradition we had to visit the local ER one night to get him checked out and some antibiotics. The following morning he was doing better and we all got some good sleep.

Also, the past few days Coops has been feeling under the weather. So much so he missed preschool on Friday, which was a Halloween pizza party. He was bumed. He dressed up later that night to go out trick or treating, but didn't feel up to it and only mad it to four houses before we had to head back.

Tonight we found out (another Urgent Care visit) that he has strep (sp?) and they gave him a big shot of penicillian. Hopefully this puts him back on track.

All of this of course brings back detailed memories of Jackers.

We miss him so much.

As our last entry stated we are working on the next chapter in Jack's story. One that involves deep ethical issues. Of course, anything that involves us and Jack's story is complicated and requires concentrated effort to understand. Fortunately, after trying a number of venues and professions, we seem to have found someone who has the energy, resources, concentration and drive to get to the truth. He will be airing portions of this chapter in a few weeks (currently scheduled for a local TV newscast at 10pm on November 11, 12 and 13th...always subject to change though, so stay tuned.) Three days of 10-15 minutes each newscast dedicated to one story is unheard of...at least I've never heard of it. It's amazing in that he's had to cut major portions of the story out because of time constraints.

We've promised not to talk about more details until later. We'll then fill in the blanks and the other portions of the story that are untold.

Stay tuned.

Friday, October 17, 2008 9 a.m. CST

FOUR YEARS AGO - All of our lives changed forever. At 6 p.m. today, it will be four years that Jack was a big, brave 8 pound baby that underwent a five hour surgery to receive an angel heart. His life forever changed at that moment.

Stay tuned in the coming few weeks and we will share more of this unbelievable drama. But for now, we celebrate what should have been a very happy and thankful occasion for us. We will go and celebrate Jack at his favorite restaurant. We of course, will be thinking of his donor angel.

**********************************
October 14, 2008 ~ Six months ago today you left us, little buddy. It feels like just yesterday. We all miss you so much, but we still hear your laughter in the air.






For the past five months we have purposefully and painfully been very silent on a number of issues concerning Jack. We have conducted a thorough investigation into a number of issues, parts of this investigation are still in progress, however what we have found out, and can document, is maddening, hurtful and in some cases, stunning. Our investigations have taken us across the country, into federal agencies and deep into the souls of many people, including our own. We have tried to maintain our objectivity throughout in order to avoid needless and unsubstantiated speculation. We have involved third parties, not as advocates, but as fact checkers. Those who really know us know that while we have passion for our beliefs and, as Jack personified, are not afraid to fight anyone or anything, we do not subject ourselves to anything dishonorable. Robin and I have built a life around that. Our sons continued that tradition. And Jack lived and died by that code. In the weeks ahead, when things are truly ripe, we will be able to reveal more.

Please stay tuned and tell others to check back in, we will need the support.

Wednesday, October 8, 2008 9:03 PM CDT

October 14, 2008 ~ Six months ago today you left us, little buddy. It feels like just yesterday. We all miss you so much, but we still hear your laughter in the air.






For the past five months we have purposefully and painfully been very silent on a number of issues concerning Jack. We have conducted a thorough investigation into a number of issues, parts of this investigation are still in progress, however what we have found out, and can document, is maddening, hurtful and in some cases, stunning. Our investigations have taken us across the country, into federal agencies and deep into the souls of many people, including our own. We have tried to maintain our objectivity throughout in order to avoid needless and unsubstantiated speculation. We have involved third parties, not as advocates, but as fact checkers. Those who really know us know that while we have passion for our beliefs and, as Jack personified, are not afraid to fight anyone or anything, we do not subject ourselves to anything dishonorable. Robin and I have built a life around that. Our sons continued that tradition. And Jack lived and died by that code. In the weeks ahead, when things are truly ripe, we will be able to reveal more.

Please stay tuned and tell others to check back in, we will need the support.

Wednesday, September 24, 2008 11:32 PM CDT

I was away on business for a few days lately. I missed my family, and while it was nice to cohort with business associates and have some low pressure fun, the loneliness of being away took its toll. Especially while traveling, sitting on an airplane when all you have to do is think. My spirits were lifted though when I returned. Coops was fast asleep, but Robin told me that he said he couldn’t wait to see his ‘Daddy friend’ and he was going to hug me, kiss me and tell me he loved me. It still brings a smile to my face to hear that.

Coops is growing up and maturing. He and Mom have been busy learning to write his letters and tie his shoes. He is making progress on both accounts. He’s a southpaw, so writing is a little difficult for him to learn and thankfully Robin is ambidextrous so she can help him out. I find it very alien to do anything on my left side, so it’s a challenge. However this summer Coops was throwing and batting on his right side, so he just may be a natural switch hitter. (Okay, I know, I shouldn’t be thinking and pushing this, but boy, it’s hard for a hard core baseball fan not to think of his son as the next great left handed pitcher or power switch hitter.)

Soon we will be taking a little retreat, just the three of us, to an out of the way place in Wisconsin to rest and relax. (Coop thinks he’s going back to Wisconsin Dells…whenever he hears the word Wisconsin…) Anyway, not sure how it’ll go, but we’ll try to use the time to rest and unwind. I would say reflect, but that has been on overdrive ever since April 14th. Our sorrow, as time goes by, burrows deeper into our psyche. As the new reality naturally takes over, we began to understand the fact that Jackers is not part of it. At least not part of it physically. We don’t like this reality, but we can’t do anything about it, so we soldier on.

There’s not a day that goes by that tears aren’t shed. We are very determined to keep Jackers’ memory going in Coops. As I’ve alluded to in the past, I don’t think this is hard considering the special relationship between twins, but we nevertheless really want Coop to know he still has a brother and Jack is watching over him. Jack is not only his bro, but also his guardian angel. Coops seems to understand this. Last weekend he explained to someone that “I have a brother. His name is Jack. But he’s in heaven.”

We have good kids.

Friday, September 19, 2008 2:13 PM CDT

Life continues to march on. We are okay, we just terribly miss our son Jack. I see his pictures and the neurons in my brain shoot messages to my nerves and muscles and I can still feel him crawl up my arm, or pat my face, or his sweet smelling hair on my face.

Cooper is doing fine also, but certainly shares in our sorrow. You can tell he is lonely, he really misses his twin brother. In preschool this week Coops drew a picture of his family. Mom and Dad were very distinct stick figures, while Cooper and Jack, on seperate pages and drew at a distinctly different time, were almost identical. I mean the scale, the detail, the colors, the orientation . . . almost identical! It's almost eerie. These guys have a connection that us mere singletons cannot understand. It also makes our heart ache more as we realize the burden thats been placed on this innocent little boy.

We're trying. We're living through this and will continue to show our Coops strength through times of adversity. He will be a stong man.

TTFN

Thursday, September 11, 2008 9:17 AM CDT

Seven years ago we were sleeping soundly to the waves of the Pacific Ocean on the peaceful island of Maui. Our biggest concern were dot.com stock options and a planned helicopter tour to the Big Island.

When we turned the TV on later and listened and watched to the events of that day, we knew our lives were changed forever.

The last seven years have brought considerable change to our nation and to our family. We learned what is truly important in life. Also, the theme that emerged seven years ago echos true today for us on both levels -- never forget!

As for our nation, we have not and continue to fight for and believe in our nation.

As far as our Jack, we have not and cannot, he is as alive today in our hearts and souls as he was just a few short months ago. We will continue to honor him by seeking the truth and assuring his life and death help others.

And someday, we'll see, hold and kiss him again.

TTFN

Sunday, August 31, 2008 9:24 PM CDT

Cooper has had a full summer. He's quite the fun, active little kid. He's excited about his new toy, 'the bug', which is a little remote control helicopter that looks like a dragonfly. I promised him a toy if he was really good and sat still while I took him into work this past weekend. I couldn't believe it, he did, so I had to buy him a toy.

After about a half hour of looking through the aisles and arguing on which toy to get (he wanted the biggest one, costing the most, while my idea was a matchbox car costing 99 cents.) Eventually we found 'the bug' which I instantly thought would be fun also. So, we both ended up getting a toy. I like this!

Coops had his preschool carnival last week. It was really fun to go there and see all these little events set up for the kids to play. Everywhere Coops went his friends were saying "hi Cooper" and he'd respond in kind. We finally got to meet Samoan, Cole and Sam. It was very, very fun to see him interact with his friends.

Coops is set to start his pre-K preschool next week and then he'll also supplement his weekly activities with some time at the YMCA. We're experimenting with things to see how he likes it. Mom is also looking into Sunday schools and we have begun the debate about Kindegarten for next year.

It's fun and exciting part of the year and our little boy is a good kid, we're so proud of him.

Of course, I have to mention Jack. It's impossible not to wonder what if?, why? during these times. It's been especially hard when we see other twins getting ready for school. The grief hits us at different times. Sometimes Robin is feeling pretty blue because she saw a particular thing, like two of every shirt in the closet. (We made a deal when we first found out we were having twins that we'd dress them alike until they didn't want to anymore, probably sometime in grade school.) Lately its me, I just am having an especially hard time right now. I just miss him so much, I often break down over the simplist of things. Like Cooper is watching the Bee movie right now. That is the movie Jack and I watched the night of April 13th when I tucked him to sleep for the last time.

More to come.

TTFN

Saturday, August 23, 2008 9:37 PM CDT

We're approaching the end of summer. We've learned a lot in the past three months, grown considerably, wept many times and had many moments of joy and happiness as we celebrate our sons. God gave us wonderful gifts.

We do not understand why He wanted our Jackers back. I think our understanding of this question, and maybe a little bit of the depth of the answer, is learned a little more each day.

We feel Jack as plainly as we see and feel Cooper. Jackers is still in our daily lives. It's the physical reality that he's not around though that hurts. Today the sun hit the window panes in the playroom just right, and there in the glass were little hand prints of Jackers. We probably never cleaned that glass since last winter, I'm glad we didn't for there he was with us.

I rambling, but just know that the love you feel for your children transends anything physical in this world. And it grows every day no matter what. We are secure in that feeling. What we continue to have troubles with though is we just miss him. We miss everything about him. His little clothes. His butt cheeks and how much he liked to be tickled. His voice. His questions. His affection he showed for his bro.

Thats the hard part that doesn't get easier with time.

TTFN

Thursday, August 14, 2008 8:49 AM CDT

4 Months today we lost our son

Sometimes I look at his pictures hanging on the wall and I feel that captured moment. I don't see the still image staring at me; I see the movement in his little body, big personality coming towards the camera, hear the shutter click open and shut, then see him move on, talking and laughing the whole way. It's not an experience I've had before, but one I have constantly now.

I love those moments.

It's been four months and things aren't easier.

However, Jack has made us strong. Jack is a hero and we live by the example he set. We will honor him and his legacy always.

Then of course, we have Cooper who is on the same level of hero-ness as his brother. Coops is doing great and 200oy. He loves to wrestle, swim, play chase and is so inquisitive. It's fun and keeps us on our toes.

At night time, when he's asleep, we look at him and love him more and more. We see him and we see how similiar in appearence he is to his twin. It's bittersweet.

TTFN





Do you have the Sports section?

Friday, August 1, 2008 9:46 AM CDT

“The beginning of the end”

Four years ago today Jack was transferred to the University of Minnesota Children’s Hospital Fairview from Minneapolis Children’s Hospital to be worked up for a heart transplant. How can it be four years later and he’s not here?

Always in our hearts, buddy.




Dad and the boys before we knew Jack’s heart was enlarged and weak.


Mr. Jack just hanging out waiting for his angel heart to arrive with his forever smile on his face. He always looked at the world through rose-colored glasses.


The boys hanging out together in the hospital (AKA “The Prison). Jack just lit up when Cooper arrived to visit him.

Monday, July 28, 2008 7:36 AM CDT

See New Photo's posted in Robin's last entry


It's almost August and our son Jackers is still not home.

The reality, the honest, no sugar coated reality of the fact that he'll never come back to our home again is settling in.

We hate it.

The jet black under our eyes is slowly turning shades of gray and back to the healthy pink of people who get normal amounts of sleep every night.

Four years of battles to fight to save our little boy has taken its toll on us and Cooper. Now, as we sleep a little more, we start to look back on this war and re-evaluate some decisions and courses. We question things. Being who we are we go beyond questions, we investigate, fact find and draw reasoned conclusions.

In the course of this exercise we find unexpected items also.

None of this has helped make Jack’s death any easier. It has no only just ‘picked at the scab’, but inserted newer, fresher, deeper stabs into our own souls. We deflect these fresh assaults from Cooper as much as possible. The burden he has to carry should not be made heavier.

The hubbub of the hunt for this information keeps the mine occupied, but not always. It’s usually at night, or weekend’s when there is less structure around our time, after Coop’s has gone to bed…the house is quiet. Too quiet. We walk pass Jack’s room and see his light on, welcoming him back whenever he wants, that you see his empty bed. You blink your eyes and tears fall down your cheek and open them again and see this beautiful little boy filled with life beyond the rim. He’s rolling around saying “Hi Dad, Hi Mom, where’s CoCoo?” You noticed the little tuff of hair on his right arm and the extra deep dimple on his left cheek. You smile. Then you wipe away the tear and cold reality stares back at you…it’s an empty bed.

Cooper gains weight and grows taller. He develops more and more everyday. He even went to his first baseball game with his old man. He’s getting ready to finish his first pre-school academic year this week. Someday he’ll go to kindergarten, then grade school, high school, college and who knows from there where? Jack never finished his first pre-school year. He loved it though, and they loved him. It’s reality. It sucks.

We feel Jack. We know he loves us and know he knows we love him. We’re lucky in that regard. We got a chance to say good-bye. We told him it was okay to leave, to go with the angels and that we’d be together again someday, as he was held so lovingly in his mother’s arms on the afternoon of April 14th. In those regards we are lucky, I guess, for we know the big things are okay. We feel secure in that love.

It’s just us, the three of us, which have a hard time. We just miss HIM so much. Everything about him. Everything.

It’s not time yet to share some of our findings. We’re still discovering facts and analyzing the meaning behind them. In time, these extra chapters in this book will be written. Stay tuned.

Tuesday, July 22, 2008 5:17 PM CDT

**New pictures added

“Two steps forward, three steps back”

We’ve all been working hard to have some fun this summer. We have to say it’s been really bittersweet, though. We had a lot of plans for four this summer. These summer months were intended to be used as rehabilitation time for Jack post-second transplant. It’s still hard for us all to really believe he’s not coming home.

When Cooper is feeling stressed out, he always mentions that Jack is coming home. Lately, he’s been telling us that Jack is coming home on Wednesday. He’s also been using a lot of “Jack-isms.” These are statements and funny little things Jack would say when he felt like entertaining those around him, which was a lot of the time.

The smoke screen of the past few months is starting to clear a little and we’ve been able to focus on the events of the last three years and go over the details of all of it less the stress and fatigue that was part of our everyday lives. As we continue to gather our information, we will share this journey with all of you faithful visitors. I’m afraid it’s going to read like a fictional novel, but sadly, the events and information are shockingly non-fiction and our family lived through each chapter of it.

It all feels like two steps forward and three steps back.



We thought we would share some captured times of Cooper.

Cooper sending birthday balloons to Jack on June 26, 2008. The boys’ fourth birthday.


Catch them, buddy!


Cooper enjoying ice cream on his fourth birthday. Notice the special birthday hat his classmates made for him at preschool.


The night of his fourth birthday. The first birthday he had to celebrate without his co-pilot, Jack. It was bittersweet. Our friend, Gail, made these special Thomas the Train pj’s for him. He loves them!




Dad and Cooper enjoying the water. Cooper’s not afraid at all.



Cooper helping Nanny Thuy celebrate her birthday. She had to wrestle him for the cupcake!


Cooper and his special friend, Miss “Marfa” (Martha), and her dog, Honey

Saturday, July 12, 2008 8:27 AM CDT

Three months ago today, July 14, at 3:19 p.m. we had to say good-bye to our precious son, Jack. Three months ago he died because he was infected while waiting in the hospital for a new heart because we were told he HAD to wait there. We miss you, Jack. We miss you and we will not forget.

*********************************
Still more fireworks in the Corbo household. Chaos, chaos, please stop the chaos.

Thursday afternoon Robin calls me at 4:00 and asks if I can pick up Coop from his new preschool/daycare center, she's been delayed at an appointment on the other side of town. Sure, no problem, I just need to be there before 6:00 pm. No problem, I show up at 5:30 and after going through security, walk into Coop's room. No Cooper, I ask where is Cooper? The teacher looks around and says "his Mom picked him." I look around the classroom, only about 6-7 kids there, no Cooper. I said, "Are you sure?" She looks down at her clip board and says yes, "she picked him up at 4:30". I look around and still don't see Cooper, so I turn around and walk outside the classroom and try to call Robin. No answer, I try home, no answer.

I remember thinking, "This is not what Robin would do...she would have told me...she wouldn't have changed the plans on me...she's that kind of Mom...but where is he, he wasn't in the classroom?"

I keep trying to call Robin as my heart starts to skip beats and I run to the car. I get in and start to race home to check that out. I keep trying to call Robin and she answers as I'm just pulling out of the parking lot. "Do you have Cooper? Where are you?" "No, I'm still at ...." I say, "Someone took Cooper, he's not at the Center and they said 'his Mom' picked him up at 4:30." "Someone has taken him!!"

Chaos erupts on both ends of the phone.

I race back to the Centerand fight my way through crowds of kids and parents who are leaving. I burst into his room and shout "Who took Cooper?" I then look down and there is Cooper on the floor playing with a truck. "Hi Dad!"

I scoop him up and run outside in a crazed daze of anger, relief and disbelief. I call Robin as she is hysterically talking to the Eagan Police Department on Cooper's description and how to get an "Amber Alert" started. She has a friend explain to them that Cooper has been found.

I cool off in the McDonald's parking lot next door and then walk back to the center and begin to release some of my anger.

The following day we meet with the District Manager and other center management and Robin gets her chance to release some of anger. I almost felt sorry. We discussed at length their emergency procedures, lock down issues, Amber Alerts, current photos of every child, etc. In other words, we went step-by-step through what kind of training the Center will institute from that point on. They assured us they have already had multiple center-wide emergency meetings.

The distric manager was very adamant..the preschool teacher's response "This is the first time in over 20 years of child care that this has happened to one of the kids I was watching."

Robin made it very clear about the what-if's if this situation had not turned out the way it did. And pointed out to them that their crisis communications plan better be in tip-top shape and when are they going to start their emergency practice drills?

The only good thing to come of this is that no one there will take their eyes off of Cooper Corbo. He has really liked it there, we really like the curriculum and the school district gave it high recommendations as it does have its own private kindergarten, so the curriculum is based on the school district's pre-K.

We haven't decided what to do yet. We do feel that the Center is genuinely sickened over what happended and did not shy away or pass the buck on their lapse in communication. Right now, Cooper goes there 2 days a week, so we have some time to think it over. The question is...if this Center is very highly-regarded, then what happens at other centers?

Why our child? Why Coops? They will never really understand what they did to us for those couple of hours on Thursday.

I'm being very patriarchal when I write this, since it should not be any parent's child, but talk about fate kicking you in the teeth when you are down. There are only two feelings worse than thinking your child is abducted...one knowing he is, and two, the worst,...well, we experienced that one 86 days ago.

"Where do we go now, where do we go?"

Friday, July 4, 2008 7:41 AM CDT

Happy Birthday America! God bless this great country and its people.

Jack, we miss you so much. Our lives are only half full now, its just not fair that we don't have you to play with this holiday. Last year was fun, kicking in the slip and slide and then driving around to watch the fireworks in St. Paul.

Coops is doing a good job keeping us active and on our toes. He's such a blessing. We're doing our best to raise him and provide a beautiful childhood for him. We only wish we would have had the opportunity to do that for you a while longer (like another eight decades) also.

In any case buddy, just know we love you, are proud of you and feel your presence everyday. We want more, but will have to suffice with that for now.

TTFN

Thursday, June 26, 2008 7:53 AM CDT

Happy Fourth Birthday to our sweet sons!

This is where it all began. We were living at Minneapolis Children’s Hospital “feeding and growing.”




Mama and Jack at the boys’ first birthday party.



A family picture on birthday number one!!



Birthday number two!!




Birthday number three!!



What do you mean, 'you're going to open ALL of the presents'?"



Quit touching the frosting, Coop!




"Love, from Mama & Daddy"

Cooper you are a special, special little boy who has brought limitless joy, eternal optimism and boundless energy to our lives. The English language does not possess the words to describe the depth of love we have for you. We doubt there is any word on this planet that does. So, in acquiescence to the limits of the written word, we say we love you lots and lots and lots and lots…

Jackers, you are not here physically, but we feel you everyday. The nerve endings in our arms still send signals to our brains; we are still holding you and kissing you. We miss you our sweet boy. Our life cannot be the same ever. However, love transcends the mortality we all face and we feel the beautiful harmony shared by all four of us every day. For reasons we cannot comprehend, God has taken you home, we eagerly await the same calling so we can be reunited, until that time we will honor your memory here by confronting the injustices done to you and expanding on the beauty and grace your presence bestowed on us all.

Our sons, we are so proud to be your parents! We love you. This day is a celebration of that moment when you entered our lives and it is a happy day! As our little friend, Ellis reminds us, 'Life is Good!'

Wednesday, June 18, 2008 9:17 PM CDT

I'm on a business trip today and pulled into a parking lot to collect my thoughts and figure out where I am and where I need to drive to get back to the hotel. These past few days have been okay, actually socializing and living and laughing a little with my new comrades at GT. Anyway, I'm sitting in my car, thinking about my sons and look up, there not more than 50 feet from me is this big billboard..."Jack's personal tragedy inspired others to help others. . . . June 26th"

Wow, even the date...their birthday!

It was an advertisement for sometype of town festival, but to me it was a sign of an entirely different sort.

These are the ways my son communicates with us now.

We have not loss our son, we know where he is and can't wait to join him. We just miss the physical aspects of our relationship. The ability to hold him and kiss him...to see him grow up. I sat in a college bar last night and watched young 20 somethings laugh, live, filled with excitement about the beginning of their lives. I remember those days not so long ago. I would never had thought then that I would someday have a child and have him die in my arms. I could never imagine the pain that is involved in that. As I looked into the eyes of these young college kids, I was excited because this was Cooper's future and I couldn't wait to see it. I was also sad because my Jackers would not.

I believe Jack has the better end of the deal, as heaven is a paradise we cannot imagine. He knows the whole story now. Unfortunately, my feeble earthly, mortal mind cannot comprehend what heaven really means and I'm stuck here between excitement for my Coops and sorrow for my Roni. I guess the sorrow really is my own, since its me who is sad. I'm sure Jack is laughing and having a good time with him many friends, making room for his old man and Mom for that day God calls us home again.

I don't know how I'll feel tomorrow, or the day after, except I'll miss him. Right now I take one day at a time, that's all I'm capable of. I ran into a guy in his 70's the other day. He said he loss a son 44 years ago and every day since he's cried and thought of him. He went on with life though.

I know that is what I'm suppose to do. Robin does also. For a variety of reasons we must, but mostly because of our infinite love for Coops and need to honor Jack. When you have children you think, "this child will be my legacy on this earth, I will do everything I can to make sure he or she is happy, a good person and contributes." I'm beginning to realize that because Jack died out of order, his legacy is us, and as such we have a sacred duty to honor him and his life. His legacy is one of inspiration, joy and unconditional love. We must find a way to honor this. We're searching...

Saturday, June 14, 2008 1:11 PM CDT

two months ago right now Jack coded, the first of three over the next two hours. He fought like the biggest, bravest, strongest boy he was; but it was time for him to go and we had to tell them to stop. I am the proudest father on the face of this planet; we are also one of the most heart broken parents (and twin brother). Two months have gone by since we saw you last Jack, the pain is just as fresh, there is just 60 days dirt to cover up some of the wounds. We miss you so much.

Thursday, June 12, 2008 1:32 PM CDT

A year ago this afternoon it was in the 90's with equally high humidity. Mom and Cooper went to the 'cheese store' to get some groceries and Jackers and Dad stayed home to set up the pool I just bought. I tried several times to find a spot to set the pool up, but grew tired, so I took Jack into the garage to work on something else and to have him near me. A few minutes later he became non-responsive ... I called an ambulance ... we rush to the hospital . . . we find out its hypoglycemia, not heart related, but a few days later he does have heart issues related to a pleural effusion . . . we start down the road to re-listing . . . we go home . . . we go back ... we go home . . . upon advice to raise his UNOS status listing, we go back in . . . Jack sits around the hospital waiting for a heart . . . he gets sick from the Hospital . . . he dies.

I knew there was a reason I was feeling so gloomy and blah today. Today started it.

As we look back over things that have transpired these past twelve months we start to second guess ourselves and the advice we received and some of the treatment Jack got. There are more questions than answers now than before.

Nothing will bring our son back to us. That is the fact that we have got to accept, we have no choice. The pain with the acceptance process waxes and waines, but in general is unbearable. At times, you don't want to go on, what is the purpose anyway. At other times, you feel inspired and go on.

We love our sons more than life, more than can be measured or described in writing. We will honor him in what remains of our lives and in raising his brother to adulthood. We will not allow him or his life or what he taught us to go unnoticed. We will

Sunday, June 8, 2008 8:10 PM CDT

This afternoon we got back from our first trip away...we went to one of the mega waterparks in Wisconsin Dells. It was fun getting together with some friends from Chicago and Coops had a great time. (except for the tornadoes and severe weather that cut into our fun...) It was bittersweet though, for everything we did we thought of how Jackers would have liked it.

Coops was fearless; his 40 pound, almost four year old body did everything from the Big Waves to the 6 story water slides (he barely made the 42 inch height requirement, probably just with the good will gained by his father's laughs and chides to the life guard). Anyway, I thought we could go down the slide together, but the lifeguard said no, its a 'singles event'. Okay, I run down the 100+ stairs to get to the end of the ride and wave my arms up to the lifeguard way up on top. He lets Coops go down and away he slides on the matt...I see the little shadow of him as he twists through the tubes and emerges out, shooting down the slide and whooosh into the water at the deep end. All smiles. Mom has pictures to prove it. Okay, if Coops can do it, I can too! So, we both go back up and 'race' down, side by side. It's not a ride for those with weak constitutions. I'm a little more endowed in the mass column, so I beat him down and go to the end of the course, Coops comes down all smiles and ends a few meters short of me.

Well, that was the beginning. Every big slide we saw we had to try for the next three days. It was fun, but almost a little scary also because Coops knows no fear. Plus, climbing all those stairs was a good reminder that I need to get in shape!

In any case, it was a good trip, but one full of silent pain as a big part of our family was only there in spirit. But we did feel Jackers every step of the way. We're going back in a few weeks to celebrate their birthdays (a few days early) with all of his cousins from Robin's side (also, one cousin's HS graduation celebration and one aunt's birthday). It should be fun, can't wait! Hopefully we'll post some pictures later on.

Today after we got home and we were busy unpacking and settling back in....Coops was playing in the bonus room and all of a sudden I hear "Todd, I want to talk to you". A cute little voice coming out of the intercom speaker in the wall. I push-to-talk and say "yes Coopie". "I miss Jack." "I miss him too, Cooper, but he's here with us." "He's an angel." "Yes Coops, he is; you can talk to him whenever you like, you can do that with angels". Coops then spoke, not knowing the intercom could still pick up his words "Jack, I miss you, come home and play with me." I then spoke into the intercom "Coops, Jack loves you and is here" . . . "yes Dad, I know".

These little conversations occur from time to time. The other day Coops just started to laugh out loud while eating lunch. Robin asked, "what are you laughing at Coops?"..."Jack, he's laughing, he's funny, nee nee". These are true utterances coming from Cooper, unsolicited, genuine and pure as their souls. We have heard that twins have an unspoken connection, and have further heard that this connection sometimes extends between our world and the next.

We don't know if this is what is going on with our Twins or not. We'd like to think so, it would certainly ease the pain in our minds knowing that Cooper doesn't have to go through life without his bro. One thing we do know though, Jack is with us, we see him in so many ways. Even for those brief minutes of realization, our pain is eased.

TTFN

Monday, June 2, 2008 1:48 AM CDT

We walk around with our souls ripped down the seams, our life-energy slowly oozing out. There is nothing that can replace what we loss, except the pain of the vacuum of lonliness. Our son is no longer here, everything reminds us of this. The one thing that brings joy to us is his other half, but as we see him looking for his life long playmate, the soul he shared everything with from the moment of conception, we start to understand that his pain is something we cannot understand. Watching this, with no tools to help, doubles the pain and loss.

We miss our son. We are sad because our son misses his brother.

"Where do we go now?"

Tuesday, May 27, 2008 9:52 AM CDT

I thought last night that I had a fit of inspiration coming and I'd journal something interesting and profound.

Instead, all I get is blank.

The numbness of the endless pain associated with the death of our son, Jack.

The daily torture of waking up and not having him there again.

The frustrations and mental anguish of knowing things could have been different.

There is one thing, and one thing only, that is keeping me going, its Cooper. He's a GREAT kid.

This is not the final chapter in Jack's story though.

TTFN
TC

Wednesday, May 21, 2008 6:56 AM CDT

I miss my little guy so much, I just don't know what to do. I am so mad at God for letting this happen. We went to dinner last night with my priest friend. During the course of the evening he mentioned two things, first, he reminded me that "hate" or the lesser derivative of "anger" are not the opposite of love, "indifference" is. So, you can be angry with God and still love him, just like you can with mere mortals. It's okay, He understands and knows we need to get this emotion out. He was right, just getting the anger out in the open has helped. While I am still angry, a strange thing has started to happen. The memories of the last two weeks of Jack's life are fading in my mind, and at the same time, those moments of laughter, tickling, wrestling on the ground and just enjoying each other are more vivid. I look forward to sleep now, hoping Jack will visit me in my dreams.

Second, he told a story of a vineyard owner who went into town to hire some day laborers. He hired some in the early morning, went back and hired some more in the late morning, went back got some more in the early afternoon and then some more in the late afternoon. They all worked into the evening. The laborers then lined up to get paid and the ones hired in the late afternoon were first in line. The owner paid them a full day's pay. The ones hired in the early morning were outraged and shouted "we worked all day, they only worked a few hours, they aren't entitled to the same pay as us!" The owner said, "hey, it's my money! You all knew what I'd pay you upfront and I didn't hide anything." The lesson of the parable are clear, God is our master and he promises us all the same redemption and salvation, regardless of the amount of time we spend here. I can't say I enjoyed the parable when I brought it into line with my situation, but I can say I understand and can accept the situation a little better with it. As I've said before, we can understand and intellectualize that Jack (and other little boys and girls we love but are not here anymore) are better off and we're all striving to reach the place they are already at. It's just that we're just damn selfish - I WANT MY SON. I DON'T WANT SOMEONE ELSE, EVEN GOD, TO HAVE HIM. I have to be patient I guess, someday I'll get my desires. I am blessed, for I know now what awaits me in heaven. I know what paradise is now.

TTFN

Friday, May 16, 2008 10:16 AM CDT

The one month anniversary sucked.

Sorry to be blunt.

The three of us grieve differently and at differnet times. I can intellectualize that "hey, Jack's is in a better spot" or some other garbage that you hear folks say at times like this. Probably, and I believe, these statement are true...but you know what? -- I (we) am (are) selfish. I want my son here with me now and I don't like the fact that he isn't!

I (we) miss him so much!

I am now angry about everything and hate the fact that I have to walk by his room at home and know he'll never be in it again. That I have to give Coops a bath and know that our little routine of Jack first, Coop second at bathtime will never happen again. That I don't have to care about everything I use to have to care about to keep Jack healthy and alive. I hate that I have time to do stuff now. I hate it. I am angry!


**************
Supplement -- I must say I have some remorse in my expressions of anger above. I cannot remove the entry, because its my honest feeling this far and I have endeavored to be honest all through this journey. However, I do not mean to infer to anyone following and supporting and offering prayer to us and Jack that I don't appreciate those efforts. Those efforts, so to speak, have been what has carried me through times where I would have fallen down and/or apart throughout this journey. I live in a very emotionally complicated time in my life right now, and find that I have to let it out at times in order to survive.

Please forgive any transgressions I may have inadvertently sent through my passage above.

Wednesday, May 14, 2008 6:39 AM CDT

One month ago . . .

"Sometimes its like a knife, edgy and dull, that cuts a six inch valley through the middle of my soul"

Sunday, May 11, 2008 0:17 AM CDT

Mommy

Thank you for being my Mom. You gave me and Coocoo life and I absolutely loved life. You can tell that by the fact that I smiled and laughed almost all the time. You made this possible. You made life fun and comfortable, safe. When I was cold or hot, you changed my environment so I would feel good. When I had a pants full of you know what, you changed me and whispered love into my ears while doing it. When I was hungry, you made sure I was fed the best possible nutrition, to optimize my growth, recovery and general well being. As a matter of fact, you made sure my feeding schedule was set in such a manner that I never really knew what hunger pains were. When I pinched my finger in the diaper drawer, you kissed it and it felt better. When I was scared, you held me and I felt secure, content. When I needed someone to fight for me, you wrestled Dad and got to the front of the line. I learned to fight and live in perpetual optimism from you. I felt so good, so much love from you, that I did dance like no one was watching, sing like no one could hear and love like I had never been hurt before, which I never was.

Mom there were times where you had to do extra things to take care of me. Things that most parents don't know or think about, but I never knew you were tired or frustrated. I never felt the guilt of being a burden. I clearly wasn't. My health condition did not define who I was. Your love did. All I saw were your gentle hands, loving eyes and kisses on my cheeks. You did this while taking care of CooCoo and Dad (and as Esme said in her blog, keeping the cleanest house around).

I guess since I was so lucky to live in this type of environment, it was impossible for me not to be filled with smiles.

Mom, I only got to spend a little less than four years with you, but it was a wonderful time for me. I am a lucky boy, because God chose you as my mommy. I told Him that the other day. He said He knew, that's why He blessed you with me and CooCoo.

I know you cry because you can't take care of me now. It's my turn to take care of you now. So, when you go to sleep tonight feel my gentle kiss on your cheeks. When you're hungry, tired, scared or lonely, I'll make sure you get what you need. I'm there with you. Always. Also, when you worry about Coops, don't be afraid, I have inside connections now and I'll use them to help him in his journey. I will never leave my bro, we are a package deal after all.

I'll send you little signs to let you know I'm with you. Just look. It may be a turtle crossing the highway or a knowing smile from a three year old boy in a stroller or the light bulb going on in my bedroom unexpectedly. It's me, just believe it.

What I'm saying Mom is I know you love me. I know what love is, it's you, and I'm with you still. Just look in you heart, or stare in Cooper's eyes (or even look at Dad's knobby knees or big nose) and you'll see me. I may have left you for now, but the love we share will never, ever stop. Thank you for being my Mom.

Happy Mother's Day. I love you Mommy, Nee Nee.

Jack

Wednesday, May 7, 2008 9:24 PM CDT

Jack

We miss you buddy. We love you. Run, jump, play, be free!

Love Forever and a day,

Mom, Dad, Cooper

Monday, May 5, 2008 7:58 PM CDT

One of the most excruciating half hours of our lives ended today at 11:50 as the doctor came out and said Coop’s surgery went fine. He did excellent and was just waiting to wake up from the general anesthesia. So we went back into the waiting room until Coops woke up. The next 52 minutes were pure, unadulterated agony. I finally went up to the receptionist and asked if she could check on my son. She picked up the phone and said “Jack’s dad is wondering how he’s doing.” I didn’t correct her for a few seconds, it seemed so normal. Finally, Robin grabbed my attention and I figured it out. I said my son is Cooper. “Oh, I don’t know why I said that, there may be another patient named Jack back there.”

In any case, a minute later we heard “will Cooper’s parents come back to the recovery area?” I had to run to keep up with Robin and we burst in there and hugged our little guy. He was still a little groggy, but generally alright. I asked him what he wanted “shake juice” (aka Jamoca shake at Arby’s) or “DQ” (vanilla cone in a cup at Dairy Queen) and he responded with “I want DQ, then shake juice.” We knew then that he was okay.

His adenoids were quite inflamed and he had “a lot of fluid packed” in his middle ear, so hopefully this helps eliminate his temporary hearing loss (estimated at 30-40%). He’s very tired now, but like his brother - a big, brave, smart, strong and a good, good boy! He even managed to argue with us a few times tonight, so you know he’s pretty much back to normal, although, the doc told us the actual recovery might be worse a few days after the surgery, rather than immediately after. So well watch and dote.

We think WCCO’s report on Jack was good. We feel this need to share Jack’s story and hope it helps promote organ donation. There is absolutely no need for other brave little boys and girls to die waiting for organs. No reason for adults to either. Hopefully Jack’s story will be a catalyst…thinking of writing a book about him and his journey, always wanted to do something like that, just need to think on how to present it and make sure it honors him. Also, it has been our firm belief, from the very beginning, that Jack’s heart condition was not going to define him. We tried to let him live a life as close to ‘normal’ as possible. He did everything his brother did, so we think he did. So, if I’m to write something, it must be in the same vein of thought.

Esme Murphy, the journalist from WCCO who interviewed us and told Jack’s story through the years, posted a beautiful entry on her blog. It’s a tribute to Jack and I’d encourage all to google it and read it. (it was entered May 1st I believe, under her name on the WCCO blog site. I think if you google Jack Corbo, WCCO and Esme Murphy, you’ll get it.)

We continue to grieve the loss of our precious boy. We feel him emotionally and spiritually as if nothing happened; it’s that physical loss that causes the sick feeling in our souls. We believe he’s in a much better place, we are still emotionally bonded to him and this relationship continues to prosper. It’s just that we can’t kiss him now. We can’t hear that voice or answer his requests. That emptiness in his room or his car seat or his stroller or his many toys spread around the house. It hurts.

Friday, May 2, 2008 9:09 PM CDT

Jack's final segment on WCCO TV ran last night. See their website for the video download. I hope the message got across that organ donation saves lives. Please sign up and ask your loved ones to do the same.

We balance ourselves between unbearable grief one moment and mind and hand occuping tasks another in order to stay sane. All three of us grieve, sometimes together, sometimes at separate times. I cannot describe it to you, only to say that I no longer fear death. Not that I'm inviting the Grim Reaper over for cocktails, just death no longer holds me by the throat with iron grips. I believe the three of us have tasks yet to complete before Our Father calls us back home for a kick-ass reunion. We just have to somehow figure out how to complete these tasks without Jackers.

It's not fair. It's not right. It hurts beyound description. It's maddening. You're angry, sad, proud, relieved, happy, crying, laughing and spitting sick with lonliness all within the same second of time.

Anyway, had to get some of that off my chest.

Also, our hearts are heavy because Monday we have to go back to a stinkin' Hospital for Coops to get his surgery (adenoid and tubes in the ear). I know, this is suppose to be a quick out patient thing, but its hard to actually believe that at this moment in time.

Coops had his pre-opt check out today. They took his blood pressure and other measurements. We couldn't help but compare them to Jack's and the daily judgement-by-lab-numbers he had to endure. We couldn't help but wonder what if, why and please keep Coops safe through this.

In any case, I'll stop the rant for now. I'm sure there's more in me, so stay tuned, but for now, please pray for Coops this time. That this procedure is as low-key, quick and safe as advertised.

TTFN

Thursday, May 1, 2008 5:09 PM CDT

**WCCO will air Jack's final chapter tonight at 10 p.m. and probably in the morning, too. You can also access it on the station's website later on in the evening or on Friday.

Coops had a special role in the filming also. We think he might want to be a cameraman.

Later on in the evening after our taping, Cooper cried for about 20 minutes. Quietly, on his own. We asked him what was wrong. He simply replied, "Nofing." Later on, he mentioned Jack a few times.

They understand more than you think.

Buddies Forever

Monday, April 28, 2008 10:07 AM CDT

Two weeks ago today.

Two weeks ago right now I had him in his stroller for a little 'rocky-rocky' time to try to make him feel better.

Two weeks ago 15 minutes from now I gave him a drink and hugged and kissed him...for that last time while he was alive. Telling him how much I loved him and was proud of him.

Two weeks ago 20 minutes from now his Mom started to give him his favorite massages on his legs and arms, bathing him in love.

Two weeks ago one hour from now his brother said hello to his brother for the last time.

We can't believe its been two weeks since our Jackers died.

At times we are okay and go about our daily business. Then, all of a sudden, we're on our knees asking questions that cannot be answered in this world.

We just miss him.

All three of us do.

We just miss him.

**********

A little update - Esme and WCCO TV are coming out to the house tomorrow to do an interview. We intend to focus on the need for organ donation, as well as a tribute to our son. I'm not sure when they'll air the interview, but I'll post it here as soon as I know.

Until then, we could use some prayers as we go through this grieving process. All three of us.

Wednesday, April 23, 2008 11:37 PM CDT

We're still here. This past weekend's services in honor of our son were extraordinary, if that's the correct word to use. We feel he was honored in the most highest of manners and want to thank all who came, shared, prayed, laughed and wept with us.

We hope everyone who attended felt the same way. There certainly were many visitors, sometimes stretching out the front door I was told. Sorry for those that came and we didn't get to talk to, there just never is enough time.

Every hour we slide through the entire spectrum of emotions...from laughter to anger to outright sobbing. Sometimes we are okay and go about our daily business. It has helped that we are 'doers' by nature, so we have been busy getting our home back into shape after many months of neglect. This too brings back memories with the simpliest of things, like when you find a toy Jack loved to play with or remember him rolling around on the floor with his brother in a corner of their room.

Cooper is starting to settle back into a routine, which is best for him. He even started to go back to school this week. He lost his brother, his twin and his best friend all at once; and his parents are not up to full strength yet, so he has his own road to slog down. He's doing okay though and now has a guardian angel to help him along life's journey.

We are keeping on keeping on. The advice we were told was to let the emotions flow, feel the raw pain of it, go through it, not around, under or avoid it at all. We are doing that and trying to lean on each other through the process. I cannot even attempt to describe the pain, suffice it to say it is like no other and it cuts right through the soul.

We know Jackers is in a better spot now, free from all the crap associated with the hospital and his illnesses. We are followers of Christ and have faith in His promises. However, we just miss our Jack. We just miss everything about him. We just miss him.

We received his death certificate in the mail today. It said the cause of death was CardioMyopathy with an underlying contribution of Heart Transplantation. Which is entirely true, but the final event that set it in motion was a little more complicated. Robin and I have re-lived those last moments in our heads and hearts many times and in general are at peace with them. Even though we still wonder what ifs... We're not ready to share them yet, not that its anything surprising or titillating, its just painful now. But everyone should know Jack left this world surrounded by love, held by his mother and on his own terms.

TTFN

p.s. WCCO is going to do a story on Jack, probably sometime next week. We asked to have a chance to speak to the public about the need for organ donations, especially since April in Donate Life Month. Stay tuned for details.

Sunday, April 20, 2008 5:54 PM CDT

Jack's services these past few days were sad and wonderful. A special thank you to all the many friends and family that helped put it together, it was a wonderful tribute to Jackers. Attached below are the words I attempted to get out in tribute to my boy.

*************

I. Welcome and Thank you for sharing this fellowship in celebrating our son Jack.
a. Jack touched thousands of people around the world. He changed lives. He was and is an inspiration. He lead a fight that included the prayer of thousands and today we are here to celebrate the little hero he is, the person he was and honor the lessons he taught us.
b. I am Jack’s father and Robin is his Mother. Cooper is his brother. We couldn’t be prouder to claim these titles. On the night of June 26th, 2004 our lives were blessed beyond comprehension when Jackaroni and Coopie came into the world. Our Minnesota Twins. We were and are so proud, so honored, to be their parents. Jack’s walk was not easy, but he was never a burden, he carried us most of the time and made our job of being a parent easy. It is not an easy thing to eulogize your three and half year old son. It’s incredibly agonizing to say good bye. It rips us to the core and sets our souls on fire to try to cope with this. This hellish pain is doubled when we look at our son Cooper, Jack’s twin, and realize his loss. This is not how its suppose to be. It’s not the natural order of things. Sons bury their parents, not the other way around. But, we don’t always get what we want. God had a different plan for us and Jack and today is not the time and place to dwell on our sorrow and grief. Today is Jack’s day. Jack is finally free and is running and jumping and playing.
c. Jack had several nationalities running through his blood. The Italian in him was personified by the fact that he had a passion for life and loved all people, freely giving kisses out, never knowing a stranger. The un-dogged, indomitable determinism to fight and persevere must have something to do with the German in him. But he and I also have some Irish coursing through our veins. Today I want to try to make this eulogy in the Irish tradition, which is a celebration of his life and not the mourning of his passing. That was our Jackers; he saw the good in any situation. He could be getting an IV stick or a chest tube insertion, he wouldn’t like these things one bit, but a minute after it was done it was forgotten and he was on to concentrating on something fun.
II. Abraham Lincoln once uttered “Live a good life, and in the end its not the years in the life, but the life in the years.” Robin bought a plaque with this quote on a few years ago and it hangs in our dining room. I thought I knew what it meant, but didn’t really fully understand its meaning until I lived it with my son Jack. Jack’s 3 and ½ years were packed with ups and downs, all making up his special journey. The doctors would often say there’s “textbook” and then there’s “Jack”. He did so much in his time here that you cannot think but know how much this kid loved life.
III. Who was Jack?
a. He was a big, brave, strong, smart, good boy
b. Jack went by many names: here are a few: Jack, Jackie boy, One Eye Jack, Jackaroni, or Roni for short, or Roni-Roo for long, Mama’s Jack and my favorites Bubba or Jackers. Mommy and I use these names so interchangeably that it may be hard for some to know who we’re talking about. Every one of them is uttered with love and admiration though.
c. He had wavy, light golden chestnut with a hint of red in it with a widow’s peak. The hair always smelt great and it was impossible for his Mama not to touch it and stroke her fingers through it. He had his mother’s extra large, almond shaped blue eyes that were so big they took up half his face. When you look at him at night, and he was awake, all you saw were these two beautiful pots of love staring back at you in the dark, so full of life. His voice was a bit squeaky and nasally, but full of sweetness with just of pinch of mischief thrown in for good measure. He had a button nose that was irresistible; you just had to kiss it. His ears were perfectly formed and shaped, seeing God’s glory in every wonderful fold. His large forehead was just the size to plant Daddy kisses on and he used it to highlight his expressions and melt your heart with a simple glance. His big thick eye brows and long eye lashes were a lady killer; he had girls fawning over him with a simple bat of an eye. His mouth had a natural inclination to smile. He could be in the deepest sleep, totally relaxed, and his lips and mouth had just the slight wisp of a curl that instantly drew a smile from you. His skinny neck was made especially for whisker rubs, I just lived for that reckless giggle filled with joy when I did this. His long skinny arms, with little tuffs of hair on the biceps, were accented with piano playing fingers. He used these to act funny, like aren’t I the most funny person in the world when I stick my finger up my nose Dad? His legs and toes were gentle, soft and made to walk in the sand at the beach or kick around in his many happy dances he did at home or school. He had two white castle hamburger bun butt cheeks that even while changing a stinky diaper you couldn’t resist yourself and had to pinch them. His back was perfectly V shaped with little hairs on them, making you want to rub and give him comfort.
d. All of his physical features though were second fiddle to his personality. Jack thought he was funny and could use his physical charm to get away with anything. He was right.
i. Jack was one of those people you grew up with that could get away with anything just with the sheer force of personality and a quick controlled gesture. For instance, although Jack loved and adored his brother, he took special delight in attacking him and nothing was better than ripping his glasses off. Jack, who was smaller than his gentle giant brother, would fearlessly roll over and grab and pound on Cooper and reach for his glasses. Coop, who with a flip of his wrist could have sent Jack flying, was so gentle and would say “no Jack…Mom, Jack has my glagless”. Jack would flash Mom a big toothy, gummy smile and roll over and squeal knowing Mom couldn’t be mad at him even though he was caught red handed with Coops glasses in his hands.
ii. Jack loved people. I’d take him with me wherever I went. Frequently we’d go to Home Depot and I’d have Jack in the front seat facing me and Coop in the cargo area, bouncing around. We tried several times, especially with big carts like they have at Sam’s Club, to have both of them sit side by side facing me, but Jack usually drove Cooper to drink with this. Anyway, we’d be walking down the aisles looking for cool tools and hardware and Jack would spot someone. “HI” Jack would yell at the top of his squeaky beautiful voice. He’d get a ‘hello’ back and Jack would then flash a trademark gummy smile and say “cheese”. Coop caught on with this trick and often I’d have my twin boys alternating “hi’s” to everyone we passed. God help us when we walked pass a crowd of people or had to stand in line at the cash register. Hi, Hi, Hi, Hi, Hi, Hi, Cheese … after a while I had to try to stop this hilarity just so the cashier’s could concentrate and we could get on with our errands.
iii. Jack loved his Mama and had her wrapped around his fingers. A simple point and grunt meant “Mom, I need my stroller ride now. Cheese.” Mom, would pack Jack into the stroller or wagon and take off with IV poles and various other medical equipment in tow and around the Hospital they went. Jack said “hi” to everyone he met or would ask “whatsthat?” to things on the walls. He often knew what they were, he just wanted to hear Mom or Dad explain it again and again. The comedy. Just hearing him ask, seeing him so happy with those little legs kicking in excitement was all the payment we needed and we kept walking. Jack would sign and say “more”, his wish was our command and we’d continue on our walk with Jack spreading his love and cheer along the way.
iv. Jack loved his rituals. Daddy would give him Bubbles every night at home and after getting hoisted on top of my shoulders we’d head upstairs to the bathtub, he’d look backwards at his Mom and whisper, as it were a secret, “Bubbles”. He loved the water and how special it made him feel. In the Hospital, Mama had the joy of bath time with Jackers. He’d love all the massaging she did in keeping her baby clean. After wards he’d often roll around in his bed naked, butt cheeks everywhere, squealing with joy and just’a kicking those legs.
v. Jack enjoyed life. Really, it’s that simple. While he spent a large percentage of it held captive at the Hospital, here’s a brief list of what he experienced in that short three and half years of life: He went on car rides, telling us every time he saw something he knew like “bus” and “home”, he went to the car wash, called “Car Bubbles”, he was still a little afraid of it, but holding me or Coops hands and he was okay, He went to the airport to see the big airplanes come and go, He went to school and adored it…”who wants to go to school?” and Jack’s hand would shoot up, we think they loved him there a little also, Therapy lessons at home and at the Courage Center, where he made friends and loved exploring the building in his gate trainer, Jack had friends, Jack had a favorite Uncle, Uncle Nabil, who he just clung to during a Christmas visit a few years ago, he loved buses, he was a member of and frequently went to the Zoo, the Children’s Museum and Underwater World at the Mall of America, He proudly took rides at the Mall of America, I can still feel that smile when he went on the magical bus ride, he loved going to Daddy’s Office and rolling around on the floor, looking for stale pieces of popcorn, or going into Mama’s office at home and messing things up, He was a little clown and mischief maker. He and his brother Coop took Daddy out for Father’s Day at the Cheesecake Factory. Jack sat next to me in the booth and would all so nonchalantly grab silverware and drop them into his diaper bag. We didn’t know this until we heard this ‘clink’ and looked and found a service for 6 tucked away. He just laughed and couldn’t imagine why Mom and Dad were embarrassed. His rides in the Jeep with CooCoo were a bit scary at times, if you ever saw Coop drive you’d know what I mean, but man did he love it, He loved being pulled along in the wagon by his brother, often going to the park to go on the swing or slide, Jack went Trick or Treating and Easter egg hunting, He got to splash in the sprinkler with his feet and watch fireworks on the 4th of July, Circle time at school and singing in general brought untold joy to him, he was especially good at singing and gesturing out – itsy bitsy spider, He had several beloved nannies, especially his current one Thuy who Jack had wrapped around his finger almost as tight as his Mother, He was silly – where’s your head? He’s point to his toes and laugh. What does a cow say? Oink, oink; laugh, laugh, laugh. Naughty – pulling Coopie’s glasses off, He loved to watch Movies and videos with his brother, so much so that when he was in a car accident with me a few months ago he didn’t even notice it when I hit the deer, he just kept watching the video in the back of the van; He got to move to a new House with a room designed with him in mind, He was Happy, Happy, Happy, He loved to smile, Trampoline time at school was a special treat, He loved to be loved, Talk on the Phone to whomever would listen, Play with Cars, Birthday parties, Bubbles, Swimming Lessons, in our old neighborhood take a stroller ride over and watch High School Football games, Go Shopping in the shopping cart, Getting coffee with Mom and Dad, Being Silly, He had his own room with a Queen sized bed and 400 thread count sheets, No, I’m not kidding, this kid had taste (his Mother again) and you couldn’t refuse him because he was larger than life. He wasn’t especially fond of clothes, the less the better, even when it was cold out, his fashion statement was a size 4 pampers and Robi booties. His favorite activity though was to bounce in his bouncing chair, kicking those little legs so hard he nearly flew off.
vi. Jack was a smart kid. He and his brother knew their shapes, colors, letters, numbers, animals and much more at an early age. His favorite color, if you couldn’t tell by looking at some of the flowers up here was “orange”. He also was wise beyond his years, often referred to as an old soul. He knew the nuances in his jokes, for instance the story about calling everyone Bob or making the incorrect animal sound when asked. Remember he was three.
IV. What did he teach us?
a. I struggled with this for a while. Not knowing how to say what I really wanted to say. But in all sincerity and honesty, Jack taught us how to Love, how to laugh, how to fight. He not only taught us the true meaning of courage, he showed it to us every day. He really taught me how to live. It’s just amazing what God gave us. We love him so much.
V. How do you say good bye to such a friend as your son?
a. Jack would have simply said “Nee Nee”, which can mean several things, from night, night, to good bye, to just ‘hey friend, it’s good to see you, I really want you to have a special day today’.
b. I cannot lie to you though. We are heartbroken. Our world is shattered. Our souls yearn for that boy. For one more bubble time. One more nasally “Hi Dad” through the BIPAP mask. For one more stroller ride. For one more kiss. For one more For one more. We try to be as strong as Jack, but just cannot at times, we weren’t given the gifts he had. We aren’t as strong. We don’t possess that kind of courage. We aren’t that good at loving and forgiving. We are selfish and don’t want to let him go. We aren’t that good at living life everyday to its absolute fullest. We can’t smile like he did. We don’t know what to do without our Jackers, he was so much, everything.
VI. Where do we go now?
a. On the night of Jack’s death Robin and I walked to our car. We got in, numb, crushed, and we kept asking ourselves what do we do now? As I backed out of the parking slot I had to stomp on the breaks to avoid hitting a Red, Mini-Cooper. A Cooper.
b. Jack showed us the way again, he had to almost hit us over the head with it, but he was there to help his Mom and Dad again.
c. Cooper is such a blessing that we cannot describe it. We are so proud of him and love him so deeply. This little boy has provided his imperfect parents with strength on numerous occasions. He too is hurting over this, but that Twin thing…that Twin thing tells me he knows something we don’t…that he knows Roni is still here with us and all we have to do is look. Oh what gifts children are.
d. To close, two quotes from worlds apart. First, from my head-banging, heavy metal days; Now and then when I see your face it takes me away to that special place and if I stare to long, I’ll know I’ll break down and cry, oh sweet child of mine, oh sweet love of mine. And next from a book I use to read to both of them before night, night time. Good night my two boys, this you must know, you are both with me wherever I go. So let’s snuggle real tight. We’re never apart. Mommy and Daddy’s with you forever, right in your heart.
e. Learn from Jack. Remember our Jackers’ legacy. Hug your children. Fight through your obstacles with humor, grace and courage. Love every day. It’s all a gift. It's all a gift.

Wednesday, April 16, 2008 6:10 PM CDT

We will celebrate Jack's life (here on earth) with a gathering of friends from 5pm - 8pm on Friday, April 18th, and then a service on Saturday, April 19th, from 2pm to 3:30pm. The funeral home will be open from 1 to 2 pm on Saturday for a social gathering. The address is as follows:

Washburn-McReavy Funeral Home, 7625 Mitchell Road, Eden Prairie, MN 55344 (952) 975-0400

Jack's life touched all, all are invited.

All we ever ask for is prayers, but for those that are inclined to send a tribute to Jackers, please send it to the funeral home.

Also, some of our friends have expressed a desire to make a gift to charity in honor of Jackers, again, prayers are more valuable, but if you feel you must please give to the University Pediatrics Foundation, 200 Oak Street SE, Suite 300, Minneapolis, MN 55455-2030 (612)624-6900 (and mention our son's name).

Robin, Cooper and I are grieving. Our life is shattered, our souls have a hole in them and we just don't understand why the sun bothers to comes up in the morning. But we will be okay, Jack taught us a lot.

Thank you.

Monday, April 14, 2008 4:52 PM CDT

UPDATE - TUESDAY EVENING

Somehow we are still here, but our Jackers still isn't. Our world is shattered, we are heart broken and don't know what to do.

We feel it is necessary to give testimony to what happened in the early afternoon of April 14th, 2008, but am not ready for it yet. The pain is too great and fresh.

We have preliminary arrangements for visitation on Friday evening and a service on Saturday afternoon at a funeral home in Eden Prairie. We'll firm up details tomorrow.

We shared our son's journey and life with the world. His personality was too large and he gave so much for us to be selfish and keep him totally to ourselves. We invite all to share his final farewell with us.

Cooper was told about his big, brave, strong, smart brother's passing today. We think he understands to a degree, but doesn't really know what or how to handle it. Four more decades of experience doesn't really change that reality for us either.

Somebody please tell us that this isn't real.

Jack taught us to be tough though. We have managed a couple of smiles today, thanks to Coop and Jackers. We will honor his legacy everyday by trying to be as half as strong as he was.

***************
Our son is now an angel. He passed away peacefully in his mother's arms today at 3:19pm. He is finally at peace. He is our inspiration.

He is finally resting and playing. No drugs, no tubes, no tummy aches, no pain.

We are beyound heart broken. Cooper does not know yet, we can't think how to tell him, when we can't even tell ourselves yet.

Thank you to everyone who fought along side of us and prayed. Jack's legacy is of a happy boy who loved life beyound his years, fought hard constantly, laughed all the time and touched so many.

We will always be proud to tell his story and to call him our son.

We live in the minute now, so as time goes along we'll update everyone. For now, just know Jackers is in heaven now and is is a better place. For you fighting your own battles, our son is an inspiration and please remember him as you go along as a happy, beautiful child who had something bad happen to him.

Sunday, April 13, 2008 9:06 AM CDT

Jack situation has not improved. He is noticably puffier this morning and his weight has shot up to 17.1K. Yesterday's weight was 15.7, the day before 16.2 considering all the flux in this and his ins and outs are relatively even, the true weight probably in between. Its all related to his failing heart though.

Right now we are not changing anything in his care. We just wait.

Yesterday we had him given the Sacrament of the Sick, which I guess was a little out of order since that's reserved for those who are pass Confirmation, but nevertheless we wanted God to know we need him to intercede.

It is hard to see him like this. This is not our Jackers from a few short weeks ago. We miss that jokster and our own heart aches for what he is going through.

Please pray more for him.

Thanks

Saturday, April 12, 2008 7:43 AM CDT

A new hope?

I don't know if that's the right title for today's entry or not, but it popped into my head as I sat here. It's interesting because that was what was playing on the TV when I was at home giving Coop a bath last night (Star Wars, Episode IV). However, Jack did have a good day and night yesterday. His agitation was more subdued and he actually ended the day net negative from a fluid stand point. Today's labs showed largely unchanged values for his kidney and blood...he's still, or at least his brain and body perceive, severely intra-vascularily dry. His weight is also down. I think this level of sedation and everything may have finally found the right mark. Please Lord, let that be true.

So we'll continue along this path today and pray, watch, wait and adjust as we go.

Jack needs his angel heart soon.

With this relative calm Mom, Coop and Dad were able to get a little rest also. Not in the same locale, but that can wait.

While our whole attention has been focused on Jack, Coops has unfortunately been left scrambling for some attention. The brave little guy has been holding his own though. He is clearly feeling the effects of the stress and uncertainity we have been going through, with little questions like "why can't Jack pee or poop?" to sudden break downs in crying. However, for the most part Coop has been holding strong. He had a play date with an old friend of mine and his family yesterday. He really enjoyed himself. I picked him up around 6pm and he was so excited. He was just wired and was still awake at 10pm and talking to Mom about his adventures.

We would like Cooper to know that he is our special little boy also, and we love him as much as Jack, which is an infinite, boundryless, without reserve or conditions amount. Cooper in many ways grounds us and we thank God everyday for giving him to us to raise.

Jack is not out of the woods though. His condition is delicate and we have to optimize his chances at everything.

Many people have asked us what they can do...the most help to Jack is to pray for him. Pray that he is able to turn his condition around right now and hold strong until that heart arrives. Pray for peace in the time of grief for that family that delivers hope to mine. Pray that Cooper can stay strong through this period of chaos and yet still enjoy his childhood. Praying is a big thing to ask, for it involves putting your soul out to God, but I have to ask for it.

Also, please ask others to pray for Jackers. If they want to witness a miracle, see God's love and play a part of this most wonderful boy's life pray for him. I mean please call an old friend and ask them to say a prayer for Jack and for them to call someone and say a prayer. I can't help but think that if we can get thousands of people praying across this planet for my little boy, that God will deliver.

Thank you for everything.

TTFN

Friday, April 11, 2008 4:53 AM CDT

Up and then Down

Today was filled with some promise. This afternoon and early evening Jack was actually starting to be comfortable enough to have normal conversations with. He was even asking for movies and brief glimpses of Jackers could be seen.

However, something happened late this evening. He spiked a 102 temperature. That caused him to slide backwards in many regards. His creatinine has gone way up as well as his BUN, probably due to the vanco and other antibiotics they gave him to combat any potential virus. This caused him so much angst that all gains we made in comfort and probably even fluid management these past three days are lost. He was so out of it that he ripped his mask apart into several pieces several times. We have increased the sedative numerous times over the past few days, really he just builds a tolerance and burns through it quickly.

It is very painful to watch you child go through this. He begs for water and you try to placate him with something, or bribe him with a sip if he'll go to sleep, but its just a never ending cycle.

On the positive side though, when Jack is asleep his pressures and sats are strong. Even when awake he can still respond to your questions and even obeys instructions. It's just that he's so dry, so uncomfortable, that his thrashing about is becoming dangerous to himself. I swear, if we could only get him to sleep and be comfortable for most of the day he would improve.

Jack needs his heart soon. This is all from the root cause of a failing heart.

The idea of a surgery for a VAD (ventricular assist device) is scary, but something we will and must consider.

Cooper, Mom and Dad are tired and a little out of sorts, but we're doing our best. Please continue to pray and ask God for that heart to arrive soon.

TTFN

Thursday, April 10, 2008 10:38 AM CDT

About the same

Yesterday we did several changes in Jack's medical support. Mom and the nutritionist rearranged his feeding schedule and compared notes, we were able to document that Jack is currently meeting about 98% of his nutritional needs. That's great news. He's tolerating his feeding and ended the day almost exactly even on the ins and out, even with the fact that we increased his fluids.

His weight dropped a tiny bit, his creatinine and BUN also dropped a tiny bit. I'll take it. It's better then going the other way.

We also started Epi yesterday; a very low dose. This is hopefully going to get that heart providing a little more output to help the kidney's, which will of course get the fluid out and the BUN and creatinine down. There are risks with everything though. This may be our 'final' medical intervention that we're able to do is what we've been told. I'm not sure of that, but our minds aren't quite fully functioning now.

Jack continious to be very agitated...thrashing around in bed, pulling his BIPAP mask off and screaming at the top of his lungs. He's screaming for something to drink. Screaming "I'm thirsty." We have to deny him this as much as possible; of course he doesn't understand. We've gone up on the sedation to help compensate, but he burns through this eventually. It's very stressful in his room, our nerves are gone, to say the least on how Jack is feeling. Jack's brain is telling him he needs water, but he really doesn't. It's the BUN, we need to get that down.

Today brought some more changes. We'll continue to go up on the sedation a little and because of compatiability problems, we may start to wean the nisiritide. This could really help, provided Jack can keep his pressures, sat's and keep peeing up.

There is more discussion about a surgical option right now. A Bi-ventircal assist device, one of which is the Berlin Heart. The actual ability to do this and have Jack survive a surgery is what's being discussed. Apparently his liver is so enlarged from the poor cardiac output that it is in the way of the tubes that would have to come out of his body. We've only heard bits and pieces of what is being discussed, but it appears to be an option and risk that we may be required to take.

Coop woke up last night at 3 demanding water, he was so thirsty. Same time Jack was thrashing about looking for water. Coop has had sudden, unexplained weepy moments lately. It's a twin thing.

We're doing okay, but there are a lot of times when we break down. Especially when our Jack is not Jackers. He doesn't understand and neither do we.

Pray, Jack needs them.

TTFN

Wednesday, April 9, 2008 6:12 AM CDT

A fork in the Road.

It appears Jack has hit a point where it may not be possible to simutaneously reach the goals of keeping him comfortable and keeping him physiologically sound. Jack's BUN has gone up to 110 and stayed there for the past 3-4 days, his creatinine has also climbed. This means he is very dry...dehydrated, Saraha desert type dry. He has almost gotten to the point where he is delirious and is constantly thrashing about begging for water. We can't give him much, because of the fear of it will leak and cause his pleural effusions to enlarge and compromise his respiratory status. By being this strict in fluid consumption, we have managed to stop the effusions from growing and he is actually physiologically stable and even loss a little weight this morning.

Jack has to pay a price to keep his respiratory and fluid status stable though. We decided to mildly sedate him for now, so he can at least get some rest and not cause himself any damage from all the thrashing and stress he was having with the dehydration.

We are playing a delicate balancing game between fluid in and fluid out. Everyone believes if we were to go down on some of the diuretics that his creatinine and BUN would fall and he would feel better. The risk though of a leaky chest could mean chest tubes, intubation and further snowballing complications. Every little tick in a change we make, whether to fluid in or diuretics out, could start a chain of events that may not be controllable.

We were told yesterday that our 'ol Jackers is probably gone from us now, until we can get his new heart. That is sad to hear from a doc. Of course, if Jack can somehow bear through the pain of dehydration and we can find the formula to get the fluid off of his beautiful body, we may be able to get him back before then. In any case though, our boy needs to get his heart soon.

Jack is a strong kid and is showing remarkable guts through this. He is uncomfortable, to almost the point of hysterics, but is relatively stable. Those are the positive points that continue to give us optimism.

It's a hard thing for a parent to decide, but we both knew and agreed that it was time to sedate Jack and keep the fight going, to do otherwise is too risky.

We really need prayers for Jack. We really need prayers for that heart to show up soon. Please, please pray for that heart to be delivered soon and in the mean time that we are able to manage his condition and try to find a way to reach both goals at the same time.

TTFN

Monday, April 7, 2008 10:15 AM CDT

Fighting

Jack's doing okay. His creatinine has fallen back to the 1.50 to 1.60's this weekend, but his weight has crept up to 16.1K. There's discussion about moving his dry weight up to 14.5K, trom 14.0K, so maybe he doesn't really have as much fluid stuck in his tissue to drain out. He's been holding his blood pressures steady, his sat's are fine on a slightly lessed supportive BIPAP reading and he in moving around, loving stroller rides and getting up and out of bed. He is puffy though and has tummy issues.

"At this stage of heart failure, to be able to do these things, is remarkable, he's clearly one tough kid", to quote a recent coversation with a doc.

Jack needs a heart, soon.

It's that plain.

We ask God to deliver this heart soon.

We ask you to keep praying for that heart to come soon.

It's a hard thing to ask, for someone to donate the organs from their own child. We don't invite tragedy into someone's life, we just pray that when it does happen that out of that tragedy Jack's life will be renewed again.

We are doing this one day at a time.

TTFN

Wednesday, April 2, 2008 8:11 AM CDT

Quick Update - Friday 4/4/08

Jack has not had a good week, his creatinine climbed to 2.01 on Thursday and his weight spiked to 15.9K. His kidneys have not kept up and he is clearly fluid up and puffy. It has been extraordinarily stressful for us as we live and breath for each diaper, each lab result and girth check.

More conversations have gone on that we've rather not have. The crux of the problem is the right side of Jack's heart is so stiff that is can't deliver the output it needs to, so organs like the kidneys suffer and fluid leaks throughout his body from the circulatory system, making him puffy and compromising other organs.

This morning Jack though dropped some weight and his creatinine moved down to 1.90. This is great news! We think we can manage our way out of this with the careful balancing of ins and outs; as long as we don't introduce any new variables into the equation like an infection!!!

The long and short of it is Jack needs a new heart...soon! I think our time frame is getting more compressed as we go along here.

We heard he was 4th in line for an out-of-region heart on Monday, so his number has got to come up soon. He's #1 in this region.

We need a full mobilization of his fan club, we need everyone to pray and ask that he get that heart soon and until then he PEE like a race horse and stay infection free.

On a positive side, Jack is still the happiest kid you'd ever meet. His personality is in full bloom and he is (usually) a fun kid to be around. As Mom often says, "the happiest kid in heart failure you'd ever meet."

More Later

**********************************

Wednesday morning 4-2-08


**New pictures finally posted**

"I don't know."

Jack's blood values have made a remarkable comeback. A few days ago we were very concerned about low white blood cell counts, hemoglobin and platelettes. The docs even stopped some of his anti-rejection meds for a while to give him time to heal. Well, today they are all back in the black and looking good.

Unfortunately, the same can not be said for his kidney function. His creatinine has bounced around the last three days between the 1.60 and 1.80. Last week we had a 1.11, so it shows you how fast things can change. His weight is about the same as it has for the past 3-4 days, at 15.5K. He looks a little puffy, but not as bad as he did back in early March when he weighted this much. He's still on nearly full feeds, but they have messed around with his diuretics the past week or so and we haven't found the right formula yet. Jack is clearly intravasculary dry, so its finding that formula that will draw the fluids out of the cells and into the veins so he can eliminate it. This of course is linked to his heart function. There's not a lot we can do about that now, except of course get a new heart. Which we're praying for harder than ever. The docs did mention, in theory, about getting special FDA approval to try an experimental drug on Jack's heart. It'll supposely get it to relax a little more and fill better, thus giving him better output and helping his kidneys function better. That's about as far as the conversation has gone on that so far, so there are still a lot of questions to be answered.

Clinically, you ask?

Jack is back! Well, almost. He's playful, talking and interactive. Seems to have energy and acts like a three years old. He doesn't want to get off the BIPAP that often, its a mix of the mask becoming a security blanket to him and the fact that the fluid in his chest does compromise his ability to breath, thus probably causing a little anxiety. It warms your soul though when you hear him say "Hi Dad" or "Hi Mom" in his everyday voice...or that little giggle that comes from behind the mask...or the "nee nee" ... or "whats that?"...I could go on and on.

We love him so much.

The simple truth of the matter is though that he needs to get a new heart. The sooner the better.

Coop's surgery is scheduled for the 18th, so in holding with the pattern of our lives, Jack will get his heart right around then.

Please send more and more prayers Jack's way. He needs the familiar ones of PEE, PEE and more PEE; but also some for a new heart soon please.

TTFN

Easter pictures

Jack playing with Nurse Tami and all of his new Easter toys



Here, Mom, let me try. I take better pictures.


Holding on tight to one of the top picks -- Easter Bunny Elmo


I've got to make really nice Easter eggs, Mom. The Easter bunny likes them!


I think these will pass with the Easter bunny, don't you?


Jack's first Easter at home following his first transplant...

Sunday, March 30, 2008 1:20 PM CDT

Sliding Backwards...as expected???

Jack has not had a good weekend. His weight is up to 15.5K, from 14.7K on Thursday, his creatinine is up to 1.8, from 1.50's the same day. However, his White Blood Count, which was down as low as 1.8 is not about 5 and climbing, as is his platlettes and Hemoglobin. He's still on full feeds and only 2/3's max'd on the bumex. He's off the vaneco, which is a 'big gun' antibiotic as of Friday. All cultures are negative for any viral or bacterial growth. The working theory is that Jack did have a virus last week, it was just one that was untested for, and this is his usual post-infection slump. He's paying for all the antibiotics and changes in his diuretics done last week, now. He's had this pattern before.

He's had two miserable nights and is generally uncomfortable, with a big belly.

However, you look at him and his eyes are large, full of life and bright.

I'd agree with the docs. He had something last week, another virus to complete the trifecta for the month of March and now we're paying for it with the fluids. With some time, prayer and careful monitoring of fluids, I think we can get this back on track.

Today is Divine Mercy Sunday, as a friend reminded me the other day, and we are praying that Jack not only gets through this God Forsaken month and recovers from all these illnesses, but comes home soon and is OKAY! I mean OKAY, playing with his brother, going to school, growing up and getting in trouble and all that fun stuff type of OKAY. The way a young boy should. He needs a heart, he needs to get home and he needs to be a boy again and not a heart patient.

So we pray the ABC's...Ask for forgiveness, Be forgiving and Completely trust Jesus.

An hour before my friend called me to tell me about the Divine Mercy miracles I was on the U of M campus walking around with Cooper. It was relatively warm, the sun was still up around 6pm and Mom was given Jack some lovin' care. So Coops and I took a walk. For some reason I walked him to the Armory, where I got my Army Commission as a 2LT 20 years ago. I don't think I've been back since, so it was nice walking around, noticing that nothing really had changed. I walked to the drill floor, which is a large gymnasium area where the University had all their formal balls in the 20's and 30's. Coops was running ahead of me and just as we were rounding the corner to go into the drill hall this little boy appears out of no where. Coop and him instantly start to run around chasing each other, playing and laughing. This little boy had a bike with training wheels and the two of them took turns riding and chasing each other in the wide open area of the gym. It was so fun to watch. Finally I spot the boy's father, who turns out is part of the cadre there. He asks is your son's name Cooper? I say yes. He says we were that close (e.g fingers almost touching) to naming our son Cooper, my wife just adores that name. Oh wow I say, "we love the name and it just captures his personality so perfectly. What's your son's name?" "Jack, he's 3 and a half".

Tears filled my eyes as I thought about it.

I don't understand God's ways, but know that he has answered our prayers many times in the past. I'd like to think that the coincidence between this encounter in the Armory and my friends call, while not sequential in time, are linked and a message for Rob and I.

TTFN

Friday, March 28, 2008 9:40 AM CDT

"Stop the ride -- we want to get off!"

Thank God March is almost over!

Thanks to Cooper's teachers and school nurse, we were alerted to the fact that Coop had failed a part of his hearing test for pre-screening for school and suggested we take him to see an ENT doctor. He and Jack had been screened for hearing at around age 2 and had both passed. But screening is recommended around age 4 too. So yesterday Mama took Coop to see an ENT doctor. Well we found out he needs a minor surgery in the next couple of weeks. Apparently there is fluid in his ears to such an extent that it's as if someone had their fingers in his ears all day long. They estimated a 30-40 percent hearing loss, but with tubes and drainage of the fluids, this should go back to normal with no perm damage (interesting though, he's never had an ear infection, just the fluid build up). In addition, they recommended taking his adenoids out. So, this involves a 45 minute surgery with intubation, IV and the whole works. A relatively minor surgery, except it's on Cooper this time and he's never been through any type of procedure. He knows enough about doctors and medical clinics to be a little too concerned when those 'white coats' approach him! They are going to have their hands full.

We feel very guilty for having been so distracted to not have paid enough attention to some of Cooper's clues. Lately, he has been saying "huh, what did you say?" A LOT! He also often talks far too softly or sometimes way too loud. He also tends to act very shy, which we think he is a little, in large groups. It must have been very hard for him to not to be able to understand all that was being said. We are so thankful that his school was on top of it!

We're in the process of scheduling the surgery now. The way things work around here, it will be the day Jack gets his heart -- in the middle of Cooper's surgery. We love chaos.

Jack is coming around. His weight has trended lower the past few days, his creatinine (kidney function value) is elevated, but has started to turn south again, his blood values are slowly returning to normal, he looks pinker, has more energy and is starting to take walks around the unit again! To help with his creatinine they turned his BUMEX IV down by a third two days ago, and Jack kept up his pee output all by himself...today they cut another third off...go Jack, get those kidney's working all by yourself. Also, they stopped the IV antibiotics and went back to his usual PO Bactrim. These two events, plus time, should make his creatinine values go down again as we all believe he's intravascularily dry again.

Jack had a little 'bulge' suddenly appear on his chest a few days ago. It's right in the middle where a bone use to stick up a little. A general surgeon checked it out yesterday and thought it was a hernia like rupture, but nothing to be concerned about and would recommend doing nothing right now. It can be fixed with a few extra stitches during the transplant surgery. No real explanation on how it happened, could be from the extra internal pressure when he was so fluid overloaded. Another worry.

We're doing okay, but just tired. Tired is just a way of life for us now. We both dream of that day in about 18-24 months when we'll all board a jet and head to Florida for a long vacation at Disney. A chance to get away from everything and let our kids be kids.

TTFN

Wednesday, March 26, 2008 3:31 PM CDT

I'm not sure how to explain where Jack is. He definitely has something, some kind of bug, the third this month. (More on that in a few days when I calm down.) He's acting like himself though and seems to be keeping the fever to a low grade variety, like in the 99's. He's been pumped full of antiobiotics the past few days and that causes him to slow down, so he has a bigger belly and his weight is back up to 15.0K today. Also, some of his blood counts certainly suggest that he's fighting something off.

With all that said, he is still happy, laughing, kicking, and has the most comfortable sleep I've ever seen - hands up as if he's getting arrested, with his legs crossed, knee over knee. He just snores away and frequently sat's in the upper 90's or 100% when he's doing this. So, I think we're on the right side of this equation, just very, very, very frustrating that he has to fight this again, again and again.

He's an inspiration though.

Coops doesn't feel good either. Coughing, low-grade fever and yesterday a little upchuck from coughing too hard. He even slept in this morning, which he never does, the little red headed alarm clock is always up at 7:45am. But, similiar to his brother, the tough kid was still running around, playing tackle football with me last night and wants to go outside and play with his jeep. So, I'm not sure where we are.

Robin and I are tired, but like our kids, we will always fight.

TTFN

Tuesday, March 25, 2008 5:20 AM CDT

Not Feeling So Good

Our Easter joy was somewhat subdued as Jack started to spike another fever later in the day on Sunday. The temperature went up and down all day long and into Monday. This morning its 99.2 right now. It hasn't got real high, but sometimes the docs didn't want to treat it just to see if he would spike on. Along with this temperature, his mood has fluxated between Happy Jack and Foul Jack. Also, some lab values have been going the wrong way. So, altogether, we're a little worried again.

Any temperature in an immuno suppressed child is cause for worry. One in Jack after the March he's had and being in heart failure is cause for more gray hair.

Cooper isn't feeling the best either, with his own little rollar coaster fever going on.

Will this winter ever end?

We our comforted by the fact that both of our boys are strong, optimistic and most importantly fighters!

Please pray for both of them. We need to get both of them back to baseline and some sense of crazy normal in our lives.

TTFN

Sunday, March 23, 2008 8:20 AM CDT

Have you heard the GOOD NEWS?

HE IS RISEN!

HAPPY EASTER

Here's some more good news...Jack's weight is down to 14.4K!, just 400 grams from his dry weight! Two kilos from his high. Alleluia! He looks good and is laughing! Alleluia! His fever is low grade at best, probably back to normal, and his heart rate is back to normal! Alleluia! His creatinine is at 1.18! Down almost 150 basis points from his highest! Alleluia! He's at full feeds as of yesterday about this time! Alleluia!

Our own little Easter story. Our Jackaroni!

Separated by 21.2 miles, his twin is doing just fine. Cooper woke up nice and early this morning and ran downstairs, looking for what Peter Rabbit left him. A minute later he ran upstairs, "Mom, Dad there are eggs, Peter Rabbit left eggs everywhere, see, this one is cracked!" He then enjoyed hunting for his treats and opening a few gifts. It was great, to be only greater when we get Jackers back home for next Easter and have two little boys doing this.

In any event, enjoy this most holy of days. Both of Jack's primary nurses are on duty today, so Mom and Dad may actually attempt to go to church together! (even with Coops!)

Happy Easter!

TTFN


p.s. Stay tuned, Mom will probably post some Easter pic's later...along with her award winning captions

Friday, March 21, 2008 8:50 AM CDT

Hummmm

Yesterday Jack started to run a low grade temperature, maxing out at 100.4F. His heart rate increased accordingly to the 170-180's. We have been giving him tylenol and cold sponge baths, which have been able to bring the temperature and heart rate down to near normal. The tylenol can only be given every 4 hours, so when he's about 3 hours into it he starts to go back up a little and his heart rate jumps around a little. He appears to be fine, acting pretty normal and happy most of the time.

We are of course worried.

Please send an extra prayer, on top of all the others, for him today that this goes away and he continues his journey back to baseline. On this day when our Savior died for us.

TTFN

Thursday, March 20, 2008 8:49 AM CDT

Two steps forward, two steps back

Jack is doing okay. Yesterday night I got to Jack's room around 8pm, just as the night nurse was doing her assessments and checking all of his IV lines. She noticed that one of the lines going into the PICC was cracked around the filter and that lipids had backed up into it. Lipids are turned off at 11am on most days (he gets them three times a week). So, after talking about this and consulting with the Resident, we came to the conclusion that Jack probably did not get his PM dose of diurel and most likely missed out on 10-11 hours of Bumex. This was somewhat confirmed this morning when his weight was up to 15.2K again.

We did take a few steps forward though, with his creatinine down to 1.36! (Note, Robin went through her records from this fall when Jack was living at home and this was about the normal creatinine level then. We want something south of 1.00, but wow, what progress!)

So, we start over again and try to get the weight off. I must say though, Jack was positive 450 or so at midnight (further confirming that something was not right with his diuretics) but he only gained 300 grams in weight. In the past couple of weeks, if he was up a 100 he would have gained that much. The one night that we tried 100% feeds on the continious schedule he was up about 350 and gained 800 grams!...so, I think underlying all of this is the basic fact that Jack is starting to metabolize his nutrition a little better and shed it in ways besides urinating and stooling. Which means...he's getting back to normal!

Not there yet, but major progress in the past three weeks.

The holiest of days starts today with the celebration of Judas' betrayal of Jesus. I lied on my cot last night in the family consult room (which is strangely quiet but extraordinarily dry, I can feel the moisture wick off my skin its so dry, anyway...) and am reminded that Our Father watched his Son start his agonizing journey today. I won't even attempt to imagine what He felt as His Son went through the humiliation, torture and agonizing death, all to provide us with the chance of redemption and salvation. This event was meant as a manifestation of His love for us and the depth of this committment to us knows no bounds. Robin and I know that His will will be done, but also know that He listens to His children and wants to provide for them. So we are encouraged and continue our prayers for Jack and Cooper and implore you to do the same. The more prayers the better.

As if you needed proof...but...

During the time period that Jack has been sick (basically the month of March) there have been at least two children in the Minneapolis area die from Influenza, both with underlying heart conditions. Annually 30,000 Americans and who knows how many around the world die from this vile bug. Although Jack does not always display the fact that he is in heart failure, the fact is he is in a big way (he does need another heart after all). For him to survive this and fight off a bacterial infection and keep his heart in about the same condition ALL AT THE SAME TIME is nothing but a testament to God and His love and His answer to so many prayers (and the fact that he bestowed upon Jackers an underlying unconquerable will and the strength of many.)

Thank you, keep praying and tell others to also.

TTFN

Tuesday, March 18, 2008 10:00 AM CDT

Holding Steady, making a little headway...

Jack's weight measurements have varied considerably the past few days. We think that it hasn't been consistently done, but have greater faith in today's measurement of 15.0K (YEAH!!!) just because looking at him he looks smaller and his primary nurse is there doing it again. (We have decided that there are a few nurses that cannot take days off again, they just have to work from now until Jack goes home with his new heart. We just feel that comfortable with them and have a hard time living our lives or leaving Jack without them around.) In any case, Jack does look smaller, his 'ins and outs' are trending close to even the past few days on 2/3's feeds, so with incidentials and the fact that he is more active, this weight probably makes the most sense, give or take a little.

As you can see, I fret about his weight and fluids, but in any event this is cause to celebrate!

As Mom has been telling me the past few days, Jack is feeling better, doing more Jack stuff and she claims she can see him shrink right before his eyes. Once again I must defer to her maternal instincts, as she is usually right.

With this morning's good news they decided to go up to 3/4 feeds on him and watch his 'ins and outs' closely. Inch by inch we're getting there. Hopefully soon we'll be able to back off some of these diuretics also.

Robin also found out some interesting side effects of one of his heart rhythum drugs -- big necks, enlarge liver, upset tummy, restlessness and inability to absorb other drugs such as "CSA"! I know most drugs seem to just print out all the common side effects possible to avoid law suits, but these side effects seem pretty specific in nature. Also, Jack was getting loaded up on this while fighting off his bacterial infection and influenza. We can't say that this drug caused or contributed to Jack's downward spiral a few weeks ago, but it does make you wonder.

It also again proves the strength and will of this kid. Indomitable!

So, we're still in the fluid war trenches, but making some progress. We need continued pee, the more the better, until we can level off at his 'dry' weight (note, there has been some discussion that his dry weight should be adjusted also; that 14.0K is too low. Robin and I think there may be some merit to that just by looking at him - it looks like he's longer and has grown - but we know there is fluid still in his body and need to continue to get rid of that before we start thinking about adjusting his dry weight.)

Coops is doing fine. He is almost completely potty trained now, just needs reminders to go pee pee and occassionally has accidents at night. He just loves school and playing with other kids. He got into a little snowball fight yesterday with some of the neighborhood kids. He had fun and said 'bye kids' afterwards, then complained to his Nanny and me for the next two hours that his hands were too cold. He's such a big boy.

Coop seems to cope well with all that is going on with him. However, he does have restless nights of sleeping and frequently sits up in bed at night while still in a dream. The dream usually involves him saying 'no-no, don't do that' or 'bad black puppy', so he is still processing some of these events in his dreams. But otherwise, he's doing fine and is a lot of fun to be around.

Hope all is well with you. Please continue to pray for Jack and his pee pee, we need more.

TTFN

Sunday, March 16, 2008 11:22 AM CDT

Not too bad, looking good.

Jack has a good Mom. Yesterday's increase to 2/3's feeds was scary for me. Mom thought Jack was ready for it, especially after her discover of Kiefer as a substitute for Yogurt. Jack's been getting Yogurt as a digestive aid (he's actually prescribed Yogurt) for a year now. We think its helped a lot. A few days back when we tried the 2/3's feeds and it didn't work, mostly because Jack was having tummy troubles, we figured out that he had missed the prior days Yogurt supplements because he ran out at the Hospital (we bring in the Yogurt from home). Subsequently Mommy started Jack on the Kiefer and Jack has become a very regular man again (we use to joke that you could set a watch by his BM's, everyday, sametime, plus or minue 5 minutes).

Well, it seems to have helped. Jack did not have tummy troubles with the increase in feeds and has actually manged to lose weight, going down to 15.2K from 15.6K yesterday! Today was a 'lab holiday' so we don't know how his creatinine or BUN are, but by looking at him I think its better. Also, the Influenza B wash from two days ago came back NEGATIVE! They'll do another in a day or two before he is officially no longer infected with this nasty bug. The treatment for his bacteria infection in his blood has been completed also.

So, yesterday was a good day! Mommy's discovery and diligence has helped. Also, it seems to me, that he responds better when she's around...I mean more pee pee, more BM's and more playful. With me it's "I'm tired and crabby", "I'm thirsty, get me some water now Dad" or "Just give me another DVD now Dad." That's okay, its just good to see him like this.

Mom and Dad actually slept under the same roof last night. We're starting to feel a little better also. Coops is doing fine and is excited about spending the day with Dad tramping around doing some chores, like going into work for a while.

Please continue to pray for Jack as we enter this Holy Week. It does help. As we reflect on these past three weeks we are amazed at our sons strength and how God has showed his love through him.

TTFN

Saturday, March 15, 2008 11:34 AM CDT

Plateau time again

Jack's pretty dry (intravascular), resulting in his creatinine climbing a tinge, 0.4 to 1.72, however his weight stayed the same and his BUN went down the same. So, as the docs said in rounds where stuck at a plateau again.

We're going to try 2/3 feeds again and see how he does. Last time things didn't quite work out, but maybe he's ready for it now. Clinically Jack is feeling better. He still wants and needs the BIPAP, but has periods where he is comfortable without it. His BIPAP settings are less and his oxygen bleed into it are almost nothing, so he's really doing a lot of the work himself. In any case, its helping those lungs stay strong, so he can have it as long as he needs it as far as I'm concerned. Also, Jack is asking to be sat up and put in his stroller more and more often. He demanded it for 3 hours this morning. We don't go anywhere, but just moving around and sitting up must get the fluid to start to move south and that helps. It also is a sign he's starting to feel better.

So, we're hoping and praying and being optimistic that these are all signs of Jack getting ready to start getting more of that fluid off.

Coops had a fun day yesterday at the neighbors. He played with another 3 year old and was having so much fun that he threw a fit when I told him we had to go home. Now thats all he talks about..."I'm going to Jordyn's house."

Holding steady and praying that Jack can start that PEE PEE machine up again. He needs your prayers, please.

TTFN

Friday, March 14, 2008 2:36 PM CDT

A little bump

Jack is feeling pretty good, albeit a little thirsty. Unfortunately yesterday was not a good pee pee day and going to 2/3 feeds didn't quite agree with his system. His creatinine leveled off and went up a wee bit and he had more in, than out, so his weight went to 15.6K from 15.3K. We scaled back to 1/2 feeds and will continue to watch, so far today he has trended negative, so hopefully we're back on track.

He looks pretty good and acts like he wants to start wrestling again, so if that's any indicator, hopefully this is nothing but a little bump.

Nevertheless, Dad is a little stressed out with worry. It's kind of my nature. Mom isn't, she's been the calm one lately.

Coops is being Coops. He still loves to play with his Thomas the Train set and simulate train crashes. His imagination is really starting to take off. Coops had a friend over the other day and they were busy playing chase and driving the jeep around the neighborhood. He's a good boy, so smart and so happy all the time. We are so blessed to have him in our lives.

That's about it for now. We need PEE, PEE and more PEE. We need to break through this 15.3K mark and back into the 14's. It seems as if he plateau's out some time, so lets break through it and get down to his dry weight. Pray for PEE and increased kidney function.

TTFN

Wednesday, March 12, 2008 3:47 PM CDT

Holding Steady!

Jack continues to shrink, moving down the creatinine scale to 1.60 and his weight to 15.4K. We need his creatinine to get back to baseline around 1.00, give or take (less would be better) and back to his dry weight of 14.0K. We're making progress though and today in rounds they inched up on his feeding (to 2/3rd's), down on the BIPAP support (and on room air!) and dc'd a antibiotic he was getting for the bacterial infection. Oh yeah, Jack also got two big IM synergis shots, one in each thigh, yesterday.

Jack's proving again that he is a big, strong, brave, smart boy who wants to LIVE!

So, we just need to make sure Jack continues down this path and reaches his baseline goals. Keep him safe and away from germs!...and then...get him that heart.

The winter of '07-'08 has been a dangerous one, with lots of germs and sick people walking around. Jack is not a sickly child, having only 1 or 2 colds his entire life until this winter. Then this winter, when he was in heart failure, he caught RSV, survived and ended up stronger afterwards; then he caught a double infection (bacteria and Influenza B) and has survived and is getting stronger. We're not out of the woods yet, but man alive, this is a tough kid! I'm very proud if you can't tell.

Keep up the good work Jack.

Coops is doing fine and loved going back to school today. He's missed three sessions in a row due to the chaos of last week and an overly cautious set of parents. Coop did get to go outside yesterday (finally above freezing!) and he loved it. He drove his Jeep all around the neighborhood, including up into some neighbor's lawns and over their melting snowmen. Sorry.

Mom and Dad celebrated their 182'nd birthdays yesterday, or at least that's the way we feel right now.

A quick story. The room across from Jack's has a boy about 6 or 7 years old in it, trying to recover from a bone marrow transplant. He's obviously very ill, having three nurses and frequent dialysis. His parents flew him here from Dubai for this procedure. The other day I went upstairs into the 'meditation room' to pray. As I knelt to plead to God to intercede on my son's behalf, I was joined by this boy's father offering his daily prayers. He was obviously Muslim, as he was prone on a prayer rug and facing persumably Mecca. I have not experienced this before, but could not feel that this was something special as two earthly fathers, practicing pretty distinct religions, prayed to the same God, the God of Abraham, to ask for special blessings for their sons. It gave me hope for our sons and their futures.

Keep the prayers coming, Jack needs them! The word of the week is still PEE! God is good and He does listen.

TTFN

Tuesday, March 11, 2008 10:24 AM CDT

Jack is doing better, has a ways to go though.

In the last 48 hours Jack's creatinine has decreased from 2.22 to 1.67 and his weight has gone from 16.2K to 15.7K. He looks pink, his lungs sound better, his butt is still sore, but he has lost his 'bullfrog' throat and you can see his bright shinny eyes. Jack has started to watch his favorite Elmo videos and often lays straight on his back now, with his legs crossed and plays with his trucks. Jack had an Echo done yesterday that showed largely unchanged heart function from before, although his right ventricle may have decreased function slightly. (We've been told that the decrease is a matter of interpretation though.) Finally, Jack had a temper tantrum this morning when he didn’t get something he wanted. He started to cry, act mad and kick his legs saying “no Daddy!”

These past 12 days have been extraordinarily stressful to say the least. However, if Jackers can keep up these trends we’re on our way back to baseline. Please continue to pray.

This double infection has hit Jack very hard. It would be “tough on an adult with a normal heart” said one of his docs. So, we’re very cautiously optimistic right now as we write this over fear of jinxing it, we just need to continue to go on this trajectory. It has also brought a dose of reality to the situation and the underlying, overarching objective is to get Jack a heart soon.

Robin and I have had conversations we’d rather not have lately. However, we are both optimistic by nature and when we assess the nature of our son we continue to be optimistic. This is one tough kid, one that wants to LIVE and go home and play with his brother and grow up. So, with dogged determinism we are hell bent on keeping a positive, optimistic demeanor in ourselves and externally around Jack.

Folks, Jack has turned the corner, but he needs to continue to get better and continue to PEE and lose this fluid. He needs to get his kidneys back to baseline and then he needs to maintain an infection free status. He needs to be optimal for when we get that phone call. So we’re going to implore you some more to continue to pray! “More please”, as Jack would sign with his perfect little fingers. God does listen.

TTFN

Sunday, March 9, 2008 10:26 AM CDT

Friday's changes included going to full feeds (1200cc/day) and in a different manner (continious feeds - 20 hours on, 4 hours off). The volume and method were big changes to Jack's regimine and he didn't like it. By the time Saturday AM rolled around he was miserable with a belly ache and his weight was up quite a bit (to 16.2K, he was 15.4K Friday AM). We reweighted him several times and kept getting the same number, I just couldn't believe it!

Mom came in and said enough, I have him on a feeding schedule at home and his system is use to that. Don't change it! So, we are going back to Jack's old feeding schedule and have cut his volume back to a little over half feeds. It was also decided to play it by ear as to how much of a diurel dose to give in the PM, but to keep the AM dose at full strength.

Friday night, around 8 pm, his Creatinine had peaked at 2.46. Saturday's 3AM draw showed a decrease to 2.37, although Jack was miserable from all the food. Today's 3AM draw was 2.22 and he's peeing a little better because of it. His weight is the same at 16.2K as of this morning. We're back to making progress, but we have a ways to go ...

However...

The renal docs just signed off, saying they'll be around for consultation or if something changes, but right now Jack is stable and his kidney's are doing what they should. It's just a fine dance between diuretics and fluid to get him back to baseline and the ICU docs can do that. Less docs needed can only mean good things.

The heart docs actually did rounds in Jack's room today. I think they were just assessing the overall situation. I didn't get much of a read as to what they were thinking, I think everyone agrees that Jack just needs to get this fluid off and get a new heart!

It has been a tough week on everyone here, especially Jack. I think the long hours, stress, sickness and lack of sleep have finally eaten into my disposition. I was starting to get negative. Robin snapped me back to optimism, as she has maintained this whole week.

So, that's where we're at. Jack needs to pee, he is a little, we need a whole lot more! We need to make little baby steps in this diuretic-fluid, in's and out's dance. No more big changes, Jack does not like that.

So, as we have asked so many times before, get up from the computer, dance the pee-pee dance several times, pray for a river of yellow pee, think pee all day long and then say another prayer for Jack's overall position.

TTFN

Friday, March 7, 2008 9:38 AM CST

Jack's doing okay.

Clinically he's feeling better; his kidney function and fluid status are showing mixed to slightly better results. His weight, really the prime indicator, has started to inch down. He is down to 15.4 kilos, from his max at 15.8 on Monday. His dry weight is 14.0. However, his creatinine has inched up from 2.17 to 2.44. Creatinine going up and weight going down, together with urine output the same to slightly better indicates that he's intervascually dry...which he is. He gags a lot, which indicates he's dried out.

Yesterday had similiar measurements and they increased his feed from 30 to 40 cc/ hour - 20 hours on, 4 hours off. He was able to handle this increase in feed with more urine output and lose some weight. However his creatinine went up .07 overnight, compared to .20 the night before. Today, we are going to full feeds of 60cc/ hour - 20 on 4 off. The theory (hope) is that he'll handle this with more urine output and even-to-less weight. We can then start to ever so slowly wein the diuretics off. That would be great. That cycle would repeat itself several times and in time Jack will be back. It's kind of like untangling a ball of twine, but it seems the cycle goes in reverse as fast as it goes forward, so hopefully all of these changes are harbingers of good news.

Yesterday the kidney docs came and talked to us and opined that most of Jack's issues are heart and blood flow releated. His kidney's, while may have some slight minor underlying damage due to prolonged use of anti-rejection steroids, are fundamentally acting the way they should. They do not think he would be a good candidate for surgery right now, but once gets back to baseline he should be fine. He needs a new heart. After the docs got done and I spent a couple of minutes staring at them blankley trying to decipher the doc speak, I asked "well that's good right?" "Yes", they said, "you may smile now." Which I did under my mask.

I missed rounds yesterday morning because I checked myself into the ER. I tested NEGATIVE to Influenza A & B and just have sometype of upper respiratory virus. I feel good about that in that I'm not the cause of Jack's infection, which if I were I would no longer have a reason to hold on to sanity. I feel bad becasue I need to keep my distance from him in order not to infect him. Which I do, but its hard to stay away from the one you love soooooo much. The docs did give me some good drugs though and tell me to get some sleep. The $200 I had to pay for the ER visit was well worth it.

Cooper is doing fine, he's a busy three year old and loves playing with his Thomas the Train set. He especially likes making it crash. For some reason him and I were watching You Tube a week or so ago and came across a video of a staged model train crash. He loved it (so did I) and we spent about a hour each night since searching for more. Now he has taken these videos and using the imagination of a three year old stages his own. It's fun to see him grow like that.

Mamma Bear continues to be the rock of the family. It is amazing the strength she has provided these past couple of days. I long for her to show up here at the Hospital in the late mornings, as it gives me renewed strength and optimism and Jack brightens up also. I think I sometimes morph into 'doc think' and start thinking in terms of numbers, graphs, trends and statistics. This isn't always the positive energy that is needed. But, Mom brings the human touch and her cubby loves and responds to it.

Sorry for the long entry today, but Jack is at a turning point. He really, really, really needs the prayers today. And as before, he really, really, really needs the prayers for pee today! He needs to respond positively to the increase in feeds by peeing the same or more volume out. I think that if he can do that, then we're on a positive trend cycle.

Thanks and keep 'em coming for Jack.

TTFN

Wednesday, March 5, 2008 2:16 PM CST

Jack has landed on sometype of plateau.

Here's the situation, his creatinine has been +/- .01 from the 2.17 mark for the past 72 hours, down from a higher peak, but his weight has stared to creep down. Yeah! He has been basically even from a fluid in/out perspective for that time period also. He's on the BIPAP all the time now, but can tolerate being off of it without dropping his sat's too far. He feels better, with the influenza starting its second week its starting to slacken its effects. The fluid buildup that was in his face and head over the weekend (he couldn't even open his eyes on Sunday, the only thing you saw were his eyelashes) is gone and mitgrated down to his belly. His abdominal girth has grown, but not too bad and has changed less than 1cm in the past 24 hours.

So, whatever place we're in, we have seem to stop moving.

The heart docs think that his kidneys are sick and the kidney docs think the heart is sick. They're probably both right and wrong to certain degrees. No one wants to make any more moves right now. He is max'd out on some of the diuretics. No one wants to do anymore over fear of making the kidney's more sick.

There are several working theories on what is going on, but all of them have the same effect - do nothing right now except what we're doing.

"He's close to multi-organ failure right now", "just walking the thin line", "what a mess", "there's not a lot more we can do right now" and "we're consulting" are recent quotes we've lived around.

But Jack does feel better - from a clinical perspective. He talks, plays, watches videos and loves his Mommy time. Mama Bear bathes him, gives him messages and generally treats him the way a three years old loves. Papa Bear tries to do that, but has skills in different areas. But yes, Mama and Papa Bear are back.

Cubby Cooper is doing fine, but is feeling a little under the weather also. In all the excitiment of the past week, we've forgot to mention that he attended his first birthday party last Saturday. It was at 'Pump it Up' and he had a blast. He's a good kid and we pray for his brother every night.

So, here we are, sometype of plateau. Jack will show us the way so we'll wait for him.

He needs prayers. He needs a lot of them, to get him back down to his weight, to wake those kidneys up completely and to get back to his naughty self so when that heart comes, he's ready. He's not there yet.

So I'm going to ask that you'all pray again for him and do it often and tell others, and then start over and do it again. God does listen, I know.

TTFN

Monday, March 3, 2008 10:19 PM CST

At 8:30 am I was incredibly anxious over Jack and rounds had not started. I went to an interview with some folks with the University Pediatric Foundation, which I'm very excited about. I was a little preoccuppied though thinking of Jack. I got a page and went back to 5C to join rounds at 9:00 am. There really wasn't any good news from the Doc's ... creatinine climbed a little, weight up a little and they were reaching their max on many aspects. No assurances, no ideas, just emotionless faces on all in rounds. They left and a moment later Jack's cardiologist showed up. She came bareing gifts for Jack, but basically said that he needs a new heart. He was reaching the limits of support that they could provide and if things continued with his kidneys not working and his creatinine continuing to climb, we'd be looking at dialysis soon and other last stop measures. You immediately think what does that mean? Then what? The answer you get back is Jack just needs a new heart soon.

A minute later I find a hole to crawl into and call Robin and tell her the situation. There were tears, but she was on her way in and that gave me comfort just knowing she'd be hear also today. I went back into Jack's room and started to pat his bum and talk to him, asking him to pee. The only reaction you've gotten from Jack the past week was crying or whimpering or whining for more patting of the bum. You could feel his discomfort. I continued to pat and put my head down as tears began to run down my cheeks. I then felt me son's little hand reach up and grab my hair and pull it, laughing!

I say Jack!, he responds "Dad, nee nee". My boy is coming back. I call his Mom and he says "night night Mom" to her on the phone and wants to go to sleep.

Today was filled with little victories like this. The 3pm labs came back and the Creatinine fell a little, with less than an hour and half left in the day Jack is fluid negative!, Jack has talked and joked from time to time today - actually reading a book and counting his numbers with Mom, his face isn't as puffy and he can actually open his eyes now!, and I afraid to put it down but he is peeing a little better now.

We have a long way to go though and Jack's situation is delicate, but ... Jack's shown us the way again. Robin and I spent the entire day here with him and I think he really enjoyed the focused attention. It was helpful for us too to be able to lean on each other a little and actually be in the same physical location, something that has been extraordinarily rare in the past three months.

Jack needs you'all to pray even more now. He needs this little momentum to continue and to grow.

Jack's starting to turn this ship around, he needs more prayers though.

His strength is present in him, please continue to pray!

Sunday, March 2, 2008 4:44 PM CST

We need some prayers for Jack's kidneys to kick in soon!

In the past seven days Jack has had a bacterial infection in his blood stream, resulting in a high temp, fast heartbeat and a lot of concern. Part of the reaction to this was five days of stress dose steroids and fluids. Then, to make things worse, Jack caught Influenza sometime last week also. The steroids have caused Jack's system to slow and retain fluid like you can't believe. We overshot the fluids also, so the reaction was to press down hard on the diuretics. Jack's reaction was too much and his kidney's have slowed.

This kid is miserable. He is puffy, can barely breath, has the aches and pains of this damn flu virus (I got it too, so I can only imagine what he feels like, but I feel like dog do). His creatinine has climbed over 2 and his weight is 15.6K, from his dry weight of 14.0 and his weight last Friday (Feb 22nd) of 13.3.

We've made several changes in cares and drugs in the last 24-48 hours. It seems as if things aren't progressing any worse, but I can't tell if things have turned the corner or not.

I'm very worried. I can't express how much I love this kid and hate to see him like this. I'd do anything to help him.

After the horrible Monday Jack had, I thought he came out of it okay and was going to recover in his normal manner. I let go for a minute to recover myself and can't help but feel I failed my son miserably. I am sick with influenza B myself, but can still walk and talk and should have been at the Hospital interacting with the docs. I think things would be different today.

Please, please pray for Jack right now and some more later on tonight.

TTFN

Saturday, March 1, 2008 11 AM CST

Update Saturday morning

ANGRY, ANGRY, ANGRY – that’s how you describe how we are feeling. Jack is very sick. He’s been sleeping for the past two days for most of the day and night (a blessing). When he’s awake, he just lies in his bed and cries. He feels so bad. His kidneys are backing up.

We asked that Jack have one nurse assigned to him for each shift and apparently that vaporized into thin air. This stinking hospital system that probably has some computerized program prescribing a staffing formula is ridiculous. THIS IS ABOUT PATIENT CARE! Jack has never been sicker than when he’s been in the hospital for this stay waiting for a new heart. His health is in jeopardy and it puts his ability to endure a transplant surgery in jeopardy. We did NOT sign him up for this. His quality of life stinks. And you stand there at his bedside looking at a what’s looks like bloated, big doll that was once your funny, silly little three year-old and you start getting REALLY ANGRY.

The nurses are frustrated because they want to take care of their patients as best they can, but they have to follow the rules. The doctors must get frustrated because their patients get sicker and they want to focus on practicing medicine.

The nurses assigned to Jack right now have to run between rooms, put a gown, mask and gloves on before they can enter the patient’s room. Now this is intensive care, sometimes you have, I don’t know…an emergency…that requires an immediate response. Oh, sorry little baby, just try to keep breathing, I need to put my gear on before I can get to you. They must be exhausted by the ends of their shifts.

We are seriously questioning whether we made the right move by taking Jack into the hospital. He keeps getting sick, which is jeopardizing his transplant status, and his quality of life has been reduced to crying in bed and feeling terrible. This seems to be a horrible infection season and we are in the midst of it in the hospital, passing germs between patients. We think it is time to go home.

Come Monday, the hospital administration is going to hear about Jack’s experience. They can get off of their butts and come down to the bedside and monitor how doctors and nurses are trying to provide patient care within their mathematical formulas. Our son has been through enough and he is going to get the care he is entitled to.

Please call in your prayer warriors that this little boy starts feeling better -- PLEASE!

More later…




***********************************
Update for late Thursday evening/early Friday morning

**I’ve posted some “old” pictures of the boys. When they were from 10 months to a little over two years old.

Jack started having problems today around noon with not peeing. When Mom got to the hospital he was looking like a sumo wrestler and very uncomfortable. He went from 30 pounds to 33 pounds in the course of three days.

We also found out two disturbing facts today: Jack’s PICC line was infected with fecal matter. Yes, you read correctly, POOP! The second thing is Jack has influenza B (and now, Dad does too). The really good thing is that he doesn’t appear to have a blood infection, which is very scary (as if the POOP thing isn’t scary enough). All of this doesn’t really affect his transplant status as his surgeon will make the determination at the time of the donor offering, but he stays on the list.

Mom told the doctors today that she is ready to take Jack home. He is in the worst place to be and keeps getting sick! The POOP issue has pretty much sent Mom over the edge.

All of these things just don’t seem right that Jack gets sick from the hospital when he HAS to be there. He was miserable on Monday. I mean the ‘pull your hair out because you can’t hardly stand to listen to him anymore kind of miserable.’ For those who are familiar with Jackers – he has one of the sunniest, funniest dispositions God ever gave to a toddler especially given what life has thrown at him. Even he thinks he’s hilarious. However, when Jack does not feel well, everybody knows about it. He can handle a lot for a little kid, but being cooped up in the hospital and not feeling good at the same time is too much. Mom always says if he has to be in the hospital then he, at the very minimum, must be comfortable.

We also took Cooper into the ER because he acted like he didn’t feel well, had a fever and was very weepy all day. Unfortunately, by the time he got to the ER, he felt much better. He’s quite cooperative with the doctors as he’s familiar with lots of the equipment and procedures. He did tell them that he did NOT want a shot in his butt cheeks!

Right now we are waiting and praying that Jack’s little overused kidneys can start functioning again and get this extra fluid weight off of him. He’s so uncomfortable. We requested that his hospital status be changed back to intensive care so he doesn’t have to share a nurse. He needs the attention of one nurse 100 percent of the time to get him well again. The doctors agreed. Unfortunately, all of his primary and consistent nurses are off this cycle. It always makes us feel so much better when his caregivers know him well because they are the eyes and ears to the doctors and can get things handled quickly. Otherwise, Mom and Dad have to keep a much closer eye on what’s going on and then we end up getting sick.

May we be so kind as to ask for these specific prayers?

Please pray that Jackers little kidneys have the power behind them to get rid of all this extra fluid.

Please pray that Jackers sunny disposition returns (soon).
Please pray that Cooper and Dad can stay healthy and not so grouchy (says Mom).
Please pray for Mom as she says she’s aging in dog years.
Please pray for all the little ones up here in the PICU that need to catch a break from what seems to be a very tough start to life.
And, please, pray for an Angel to deliver Jack a warm, perfect heart that he may protect and guard for a very, very long time. And pray for the little Angel and his/her family who donate it.

Also, one more way to “pay it forward” is by donating to your local blood bank. Here in Minnesota, the blood banks are facing shortages. Blood is extremely perishable and can get wasted very easily during surgery. Our Jack will use his fair share of blood during surgery and we appreciate so much those blood donors who help to make sure blood is readily available in the bank.

One more reminder: It’s important to talk about organ donation with your family and friends. You never know when you will personally be touched by organ donation. Remember, you can’t take them with you, no matter how hard you try.

Thanks for all you do for us whether it's a prayer, card, meal, gift, smile, diagnosis, take a temperature, change a diaper, or give us a hug.

The Corbo's
Todd, Robin, Jack & Cooper

Wednesday, February 27, 2008 6:50 AM CST

Day 29???

The fireworks of super fast heartbeats, spiking fevers and parental stress have subsided.

Monday afternoon one of Jack’s cultures came back positive for a bacterial infection in his blood stream, probably from the PICC line. (They did a peripheral blood draw also and that came back negative.) He’s on a course of antibiotics now and with any luck it’ll treat the infection properly and maybe, just maybe he won’t have to get the PICC line replaced. Belly x-rays also showed an intestinal inflammation that may be the sign of another bug. The treatment for that is “gut rest”, which means no food to us lay people. However, subsequent x-rays yesterday showed improvement and Jack started back on his food regimen late yesterday (Tuesday).

Monday morning was not a good morning. I guess the seriousness of it was known by us, but not really felt until I heard the Cards folks gather around Jack’s room before rounds and list off what’s going on and then ask “does anyone have any suggestions?” I know that’s the prudent thing to do and it gets many great minds focused on the objective, but all of a sudden you as a parent feel your stomach flip backwards as you realize that these docs are making up the script as they go. Maybe we place too high of expectations on them to know exactly which path to follow in treatments all the time. In any case, they laid out a plan with many contingencies that was well conceived and gave me a lot of confidence. The first goal – break the fever!

The night nurse and I tried fans, cold baths, wet wash clothes and Tylenol. That seemed to help for a bit, but after a while his temperature started to climb past 102 again and up went his heart rate. I remember ‘getting comfortable and feeling relieved when it climbed below 200’. Perspective!?? However, the non-chemical methods were only making him shiver and his fingers and toes were ice cold, while his chest was hot, hot. Help arrived in the form of Mommy and by the Grace of God Jack’s primary nurse was scheduled to work the day shift Monday. Being the wise and veteran nurse, she said you know he’s probably built up a tolerance to this dose of Tylenol, maybe we should try a one-time higher dose of Motrium. After a few phone calls to docs to get the okay and about a half hour after getting it, Jack’s fever broke! A few hours of Mama love later and Jack was doing much better, but just plain exhausted. His heart rate was back in the 130’s and his temp was 99.

Every one was relieved…not the least of which his Cards docs!

Jack has since been doing okay but definitely is not his usually jovial self. He has a bug, maybe two, that he is still fighting off. In addition, the fluids and medicines he was given during this fight have made him a little fluid heavy again (thanks to a failing heart) and he has developed a wet cough. So we’re back to praying for pee. This was a relatively minor event, blood infections with kids that have PICC or other types of lines is not uncommon…maybe it’s been lucky the Jack has gone 3+ years without one considering all the holes he has drilled into his little body. In any case though, seeing him go through it, seeing and feeling the palpable stress in the docs voices and fearing and knowing that the word sepsis was close by put us in a place we’d rather not be.

It also brought back reality and perspective to the situation.

Our Jack rallied out of it and is recovering. We don’t know if this affects his transplant status, it may result in him being reduced to a 1B again until his treatment course is through. I’ll leave that for later.

Thanks, keep the prayers coming and pass the word.

TTFN

Monday, February 25, 2008 3:04 AM CST

UPDATE
Well as of this morning we've run the rollercoaster of what's up with Jack. Starting at midnight, we've been concerned with SVT as his heart rate has been as high as 240. However, the high heart rate can be an indicator of fever, which was Jack's case. We started tylenol and blood draws to analyze what was going on. By the time Mama arrived in the morning, we knew that Jack had some sort of an infection. At first we thought it was a bacterial blood infection and he started antibiotics. Now, we think it is a PICC line infection or contamination and we will still treat it with an antibiotic, but he may need the line replaced. Great.

His fever is breaking and he's starting to wake up and act a little more like Jack. He's smiling through his bi-pap mask. That's always a good sign.

The other bigger issue is how does this affect Jack's transplant status? We're not sure if it changes it or not.

The only thing we know for sure is we are sick of the hospital. Poor Coop didn't get to go to school today as Mom had to get to the hospital and couldn't wait around for him.

Stay tuned...

********************************
Day 27 - back on the List

Hey folks, its been a chaotic week. First, I started a new job and all the frustrations of setting up shop again, going through benefit set up and coming to grips with a new commute took its toll. Then I had the 21st anniversary of my 20th birthday, which I just can't believe is possible. And by the way, my boy is still in the Hospital awaiting his second heart transplant.

Enough of the "woo is me" crap...

Jack had a good week. He has continued to make friends and practice walking. His vocabulary continues to expand and he's picking up a little spanish along the way. Things were strangely 'normal' for us and Jack until midnight tonight.

Mom called to check on Jack as she does every night. Coops and I were zonked out in bed after a hard weekend of play and running around. (He's such a big boy and a lot of fun, albeit a lot of work to keep up with. I love him so much.)I was so torn about going into the Hospital to spend the night, but I decided not to in order to get some good rest and snuggle a little with Coop. Anyway, Robin wakes me up around midnight, Coop has his arm around my neck fast asleep, and she says Jack has spiked a fever and his heart rate is in the 170's to 180's and my internet connection to my computer doesn't work. It takes me a couple of minutes to become fully alert, then Rob and I talk some more. I try to figure out what's wrong with the internet connection while she calls the hospital to get an update. Jack's doing fine, they're taken labs, x-rays, 12 lead EKG, etc...

I get the internet working again, take a shower and rush into the Hospital. It takes me 25 mintues to get here and another 25 to get in the door (a little frustrated! a lot!!) but I finally get up to the room...full of worry and anticipation...I mean he is in heart failure after all! I get into the room and there are two nurses and three docs looking at him. Oh great. I get up to the side of his bed and Jack rolls over and yells out "Hi Dad, Hi Dad, Hi Dad!, night night" with a big toothy grin.

My blood pressure instantly returned to normal.

Blood gases look fine so far, x-ray looks better actually then a few days ago and other lab results (WBC, Sodium, etc..) are all pretty good and consistent with Jack's history. Cultures are pending, but a lot of rumbling noises in the belly and some really loose stools, mixed with volcanic gases seems to suggest something is brewing in the digestive system.

So we watch. He appears to be fine. His temp is down from 102 to around 100 with the help of Tylenol and he's breathing and sat'ing just fine. Another long night it looks like.

TTFN

Saturday, February 16, 2008 4:53 PM CST

Day 18 - "Back on the List as a 1A"


Jack, one year ago. What a difference a year makes in heart failure...He's still smiling.


Almost three weeks into the wait...Jack's doing just fine. Thanks to a group called Minnesota Big Dads, who cut through a bureaucratic nightmare, Jack has his gate trainer. His very own, bright shiny blue gait trainer. Last Tuesday the doc's and nurses of 5C, not to mention people in the hallways and some of the 5A folks, got to see Jack WALK using his gate trainer down to the elevators and back. No, it wasn't fun and games and Jack did his share of complaining, but he did it and actually most of the way he was having fun. He especially liked opening doors and cabinets. The PT/OT folks, supervised by Mom, are starting to push Jack to keep him strong and burn those pathways in the brain...Jack will walk after this is all done!

Jack's first attempt at using his new gait trainer. He got used to it after this picture. His legs are a little like noodles. It's been almost two months since he's used his legs.


In all other aspects Jack is stable. The nisiritide started last weekend has really helped and Jack's pretty much fluid balanced now a days. A heart doc stopped me in the hallway today and said this is the best she's ever seen Jack!

Let's see...how can I fake it tomorrow so they don't make me work, hmmm?


In addition, Jack's language has started to erupt...he knows his numbers 0 - 9, most of his ABC's and has shapes and colors down pretty good. He carries on conversations with you and recently struck up a friendship with his neighbor Carlos, learning a little spanish along the way ... "hola Carlos".

It's hard to believe this boy needs a heart some days.

But we know he does and we continue to wait. Jack has made many friends on 5C and that makes our wait a little more bearable. One of his new friends is Bob the nurse, and he asks about him all the time. "Where's Bob?, What about Bob?, Hi Bob!" Ody, Ammy and Ina (Jody, Tammy and Tina) are other names he's picked up, his bestest friends. I'm sure there are others, just can't think of them now as I type away.

Coops has had an eventful week also. He picked up new 'magic' glasses on Tuesday. These glasses have a new perscription (a little weaker, yeah!) and go dark in the sun. It's so cute looking in the rear-view mirror and Coops back there just a chillin. Cooper also started going to morning pre-school instead of afternoon. Still the same great teaching crew, just new kids. Apparently hes made a friend and they like to play together, and fight sometimes too. The school called the other day saying they wanted to test Coop's hearing because they thought he might have a slight problem. Yesterday they finally did it and gave us a call, turns out he has a slight hearing loss in his middle range. This could be due to fluid (they said the results are typical of fluid retention) so we're having Coops brought to the ENT to get a better idea of what to do.

This may explain why he says "huh, whatcha say" sometimes. We feel bad because we thought he was just being annoying, poor little bubba.

Cooper at the Mall of America on Valentine's Day. He was trying out for a job at Johnny Rockets.


He loves the rides!


I finished my last week at 3M in a typical soldier's fashion...just kind of faded away...a bittersweet passing, but I'm looking forward to a new future at Grant Thornton.

Mom's doing fine, just busy holding everything together as usual.

Thanks again, keep the prayers coming and we'll update more later.

TTFN

Monday, February 11, 2008 10:01 PM CST

Day 13 - Back on the List as Status 1A

Hey there folks, just a quick update. I'm feeling much better. Late last week I was a 'hurtin unit' as an old Army buddy use to say. The combination of a cold, stress, nightmares, lack of sleep and the coup de grace ... ultra dry air, put this trooper out of commission. I had to take myself out of the battle for a while, so I slanked home early Saturday morning and rested, slept and took any cold medicine I could find. Mama bear was just a step behind me and was hurtin also. So we did the best we could and rested, got some good food and laid low with Coops. I only saw Jack a couple of hours on the weekend, Mama bear couldn't stay away that long so she spent a little more time at the Hospital, but still curtailed activities as much as possible.

It worked.

After these past 48 hours I feel much better. It's amazing what a vaporizer and 7-8 continious hours of sleep can do.

Mama bear is doing better to, but seems to continiously walk that fine line.

Jack has come around also. His fluid status has leveled off and now that he's on nisiritide again (started last night) the fluid and effusions in his body (from last week's PICC line replacement) are coming off. Today he was full of energy and could hardly be kept in bed! I'd say another day or two of the nisiritide and he'll be back to 'naughty Jack'.

Coops had a friend over today and had a great time. He's really maturing and has long conversations with you about intriguing things like Sponge Bob and a Train Bank he saw on a TV commercial (running out of excuses for not getting it, looks like I found an Easter present for him).

Anyway, Sunday morning I'm lying in bed half asleep, praying for another hour, when in pops Coops. "DAD, DAD, the moon goes down and the sun goes up, time to get UP! DAD, DAD get up, the sun's up!"

How can you argue with that logic?

Doing okay, more tomorrow.

TTFN

Friday, February 8, 2008 3:18 AM CST

Day 10 on The List, again

Wednesday's trip to the OR to get a new PICC line has had the usual ramifications...namely the anestesia has backed up Jack's compromised circulatory system and he's developed a little effusion. This has pushed his lungs in a little and thus he's having a little more difficult time breathing and keeping his sat's up. So, consequently he's on the BIPAP machine, with a little oxygen bled in, most of the day now. This is par for the course for Jack and we expect him to pull through this in the next couple of days...I mean to be back to the naughty Jack, demanding rides and saying hi to everyone.

Jack remains in good cheer, but is very tired. Kind of unexpectedly Jack was approved for the RSV shot today. He's just over RSV, but the threat of it returning is too much considering what we're trying to do now. So, Mom trooped in today and had to help him through the trauma of two big IM shots, one in each thigh. Jack screamed "no, no, all done, all done, Daddy, Daddy" and Mom soldiered on, calming her baby down and then giving him a bath afterwards. He loved the bath and was soon kicking and smiling and being naughty again.

Coops and I enjoyed Dad and Me class tonight. He calls it "Art School", no idea why, but that's what he calls it. We had a good time. Dads spend the first hour in unstructured play with their kids, aged 1-4, and then the second hour in a group discussion, lead by a teacher. Our group discussion tonight revolved around values and it got interesting. The teach gave us a list of 13 values and asked us to rank them in order of importance. I lead a group of Dads protesting the exercise, saying that there is no way any of these values are at the exclusion of the others, they are all equally important and to put one ahead of another would be sacrificing the whole. I guess this was the point of the exercise, namely achieving balance in raising children is difficult. Duh, but it got me to thinking...

I've had a good, interesting life so far and in so many ways has prepared me for this time of trial. Sometimes you can't see these things, despite them being right in front of your face. I've been blessed with a rich mixture of experiences, from travel, to educational achievement, to friendships, to athletic and physical challenges and finally a broad spectrum of work experiences. I don't mean to say that my life experience has been full of fun and games; no, it's been challenging and taxing. God has tested and tempered me every step of the way.

Maybe this is the trial he was preparing me for? It's hard to not believe this, but from opening doors on different jobs and bosses that have allowed me the flexibility to be the parent I want to my kids, to having a strong wife and mother to my children, whose indomitable will provides a protective shield for them as they grow, to my kids themselves where every day they show me what matters in life, what beautiful wonder there is in the simplist of things and who have inherited their mother's iron will and their father's quest and thirst to experience all aspects of life.

It's hard not to give credit to divine influence here.

In any case, as I sit here, again at 3 in the morning, on the eve of another big life changing event (Jack's pending surgery and me starting a new job) I can't but reflect on my life's story so far. I have a hard time finding something that hasn't in the long run turned out to be positive and hasn't been a factor in preparing me for being Jack and Cooper's father. It gives me hope, as frankly, there are many times as I sit here, all alone at night, that the nightmares return and I'm afraid of what the future will bring.

I'm a thinker; and after analyzing the situation, applying it against the backgroud of my experiences and consulting the values of my faith I am lead to the encouragable conclusion that God walks with me and my family and while His will will be done, there is every reason to believe in positive outcomes.

Having gone through this mental exercise and calmed my fears, I'm ready to go kiss my boy good night again and go to sleep.

TTFN

Wednesday, February 6, 2008 8:23 AM CST

Update - Day 8 (night)

Jack sailed through the PICC line replacement procedure. I just got here and he's a little puffy from the drugs, but looks pretty good. He's acting very naughty, so his personality is starting to come back.

Get this - Jack actually went down to the OR early and the procedure didn't take as long as expected.

I can hardly believe I just typed that.

Coops had a good day at school - made a new friend...but I guess sometimes they fight also...imagine that...sounds like three year old boys to me.

Take care, more tomorrow...

TTFN

Day 8

Quick update, Jack is heading to the OR this morning to re-wire his PICC line. Apparently it is not properly placed, and is too near the heart, so they'll try to adjust it or replace it. As before, the docs are going to try to do this under sedation, but if this in not possible, he'll have to be intibated and put under for a while.

Since its performed in the OR, we have to wait in that room again and stew.

Jack's weight has trended up the past few days and this may be the main reason, namely his milrinone and dopomine aren't being properly delivered. Nevertheless, the docs and us agree that some of the weight gain is good, and he is officially now a 14 Kilo child (slightly over 30 pounds).

Watch out Coop.

So, please pray that Jack sails through this procedure quickly, safely and we can get him back to his normal, naughty self as soon as possible.

TTFN

Monday, February 4, 2008 8:30 AM CST

**We are very touched by School District 196 and the Early Childhood Learning Center for offering to provide our family with meals. It is so thoughtful for you to think of our family. The boys’ teacher, Miss Leslie, provided us with the best homemade chicken pot pie we’ve ever tasted. The entire dish was heart healthy and wonderful. Your generosity has warmed our hearts and we say a humble “Thank you.”



Day 6 - "Back on the List"

Jack had another quiet, good weekend. He seemed to be getting a little 'wet' early on Saturday, but a few extra doses of metalozone and poof, he's back to fighting shape.

And he is a stinker. I'm watching the Super Bowl last night and Jack is rolling around begging for attention. I'm engrossed in the game (first time in a long time) until suddenly the alarm goes off showing Jack's sat's have dipped into the 70's. What the heck? He's been doing fine, so I turn my head and look into the bed and there's Jack with a big grin...totally nude...with the pulse ox sensor in his mouth.

Okay, I got the message and we went for a stroller ride!

Coops is doing great. He's went to the dentist the other day and received a good check up, just a little chipped tooth ... who knows from what, he's always running and bumping into things. He starts school today again, however its in the mornings now instead of afternoons. This is a shift which we think will benefit he seem to be puttering out in the afternoons.

Otherwise, we're just waiting. Every day we have a moment or two of pure terror as we remember and project what Jack has to go through again. These moments are greatly mitigated though by Jack's current position of strength and
good cheer.

Thanks again for all the prayer, keep 'em coming

TTFN

Friday, February 1, 2008, 3 PM CST

February 1, 2008

**We are very touched by School District 196 and the Early Childhood Learning Center for offering to provide our family with meals. It is so thoughtful for you to think of our family. The boys’ teacher, Miss Leslie, provided us with the best homemade chicken pot pie we’ve ever tasted. The entire dish was heart healthy and wonderful. Your generosity has warmed our hearts and we say a humble “Thank you.”

The month of February is all about heart. It’s National Heart Month, Valentine’s Day and a few birthdays for the Corbo Family. Wouldn’t it be appropriate for Jack to receive a new angel heart in the month of February? It will serve as another birthday for him and really help him celebrate the month of Valentines every year.

Heart Month comes around to remind everyone, but especially women, about potentially fatal cardiovascular disease, which takes the lives of more than 460,000 American women a year – more than any other cause of death.

In an American Heart Association survey in the past two years, 77 percent of Caucasian women were aware that heart disease was the No. 1 killer, while only 38 percent of African-American women and 34 percent of Latina women knew of this.

Mr. Jack Corbo is quite the pampered little guy these days. He had a hair stylist come to his room today to give him a haircut. Dad gave her a big tip – she earned it. It was like trying to cut the hair on a missile. He usually does pretty good with getting his hair cut – but that’s on the outside world. Jack is not interested in cooperating in too many things these days unless it involves someone pushing him around the halls in his stroller so he can say “Hi” to anyone who comes within 50 feet of him.

He’s been having fun with some of his caregivers. “Bob” was his nurse recently, so every time Bob would leave the room, Jack would say “Where’s Bob? Bob, Bob, Boooobbbby.” Then he started kidding the others by calling them “Bob” too. He thinks he is hilarious. Actually, the kid is pretty funny.

Cooper is still managing his crazy lifestyle. He continues to wake up in the middle of the night screaming and he misses his “daddy friend” and his Jackers. When he gets mad at Mama, he tells her he’s going to find a new Mommy. He woke Mom up at 2 a.m. to tell her he had to go potty. He’s doing pretty well with his potty training, except for the 2 a.m. wake up calls.

We again find ourselves asking for your prayers for another angel to bring Jack his ultimate Valentine. Please pray for his brother, too. It is hard on both of them for different reasons and sometimes we expect a lot out of Cooper. He doesn’t understand what’s happening, but he knows far too much medical stuff for a 3.5 year old.

We’ll keep you updated…





************************************
Update

This morning Jack was upgraded to status 1A.

Last time this was a 72 day wait.

This time we feel it won't be...no idea why, but we don't think it'll be that long.

Pray for Jack, pray for that family somewhere who has to face this most difficult of time.

TTFN

p.s Jack's doing great right now, except for a butt rash and unruly hair.

Monday, January 28, 2008 8:59 AM CST

Sorry, its been over a week since we’ve updated the website. That’s good news, basically Jack is just hanging out and acting like a three year old. The only difference is he’s doing it in an ICU unit.

Here’s the scoop, this past week Jack has been feeling just GREAT! The combination of heart squeeze drugs, diuretics and other medicines are working. Jack’s weight has stabilized, no more leaky chest problems and his breathing and lungs are doing fine. He has developed a bit of a diaper rash again, so at least he gives the docs something to talk about during rounds.

Jack has started his PT/OT regimen again and is doing fine. He still sleeps with the BIPAP machine on. He doesn’t really need it, but it does take some of the work off his heart and he doesn’t mind it, so why not keep him optimized as we prepare for the transplant surgery? Sometimes we have to remind the different caregivers that we’re not trying to get Jack ready to go home (yet), he’s staying until he gets a new heart…so there’s no need to wean him for the return home.

Jack health has improved so much that the docs and nurses are starting to see his true personality. That’s usually reserved for us at home, when he’s not sick, but now since he’s stuck in the hospital and feels good…well, lets let everyone know who he really is. Here are a few vignettes of the true Jack: (1) pulling the PICC line tubing until the medicine pops out of the pumps, (2) pulling the pulse ox or tele wires out of the computer and acting like it was an accident, (3) sticking his fingers up his nose and smiling when doctors come in to examine him, (4) thinking everything movable should be thrown out of his bed, (5) demanding to go on stroller rides every hour on the hour, (6) smiling and saying “hi” or “bye” to every nurse on his stroller rides (it’s become a little victory tour for Jack… as he yells hi to everyone, all the nurses come out of their rooms and stand in the doorway saying hi back), (7) his vocabulary has expanded to include the names of his caregivers and all the different items in his bed and room, (8) he rolls over to the side of the bed and pats his hand down on the mattress, motioning for the nurse to join him in the bed (oh oh, where is this going?), (9) yelling at the top of his lungs when he wants a drink of water and (10) demanding the phone to call Dad or Mom when he’s lonely. Jack’s one issue though is his hair, it’s unruly, long and looks like Nick Nolte’s after a hard night of drinking.

All of these events have conspired to turn Jack into a loved patient in the PICU. (He has his fans over on the Floor also, who stop by and visit him regularily…for that matter, he has fans everywhere…whenever I’m giving him a ride in his stroller he says hi to everyone and they say “hi Jack” back. I have no idea who they are, but they know my son.)

Thursday the 31st Jack will more likely than not be upgraded to status 1A. We’re on the hot seat then and need prayers.

Coops is doing great also. He likes his school, his Dad and Me class, playing at home and going to the Hospital to visit Jack. He has matured in incalculable ways these past weeks and is pretty adjusted to the weird lifestyle we got going on now. Coops and Dad have started to spend Friday afternoons together. We need some special one on one time and it’s been fun. I usually pick him up at preschool and then head to the Mall of America and ride some of the rides there. He loves it…especially the log ride (he loves roller coasters.)

In other news, I’ve recently announced that I’m switching employers. This was a very hard decision because I really enjoy where I work, but Jack has pretty much eaten his lifetime max on his health insurance at 3M and in weighing all the options it was best that I get new employment, and thus new lifetime max’s on health insurance. That’s the bitter part. The sweet part is where I’m going should be a fun, exciting and a career broadening place. It also has an ‘unlimited lifetime max’ on insurance with very similar coverage as 3M’s, so it’s a winning choice for me.

3M has been great to me and I have nothing but good feelings and memories on my employment here. It’s unfortunate that sometimes life makes choices for you. However, when that door shut, God did open another for me, and I’m sure my new employer will be just as positive an experience.

I promise to update more often, especially now that we’re moving into 1A territory.

TTFN

Sunday, January 20, 2008 1:07 PM CST

Looking Good

This last week Jack has shown marked improvement in all things. We started the Nisiritide last Saturday and that seemed to have pushed Jack off the plateau he was on...for the better. He has dryed up all his effusions, his lungs are going bettern than they have in about a year ('sating in the 90%'s on room air), his weight has evened out at the dry weight, he looks great, even his gums have gone from a burgandy color back to the healthy pink...his teeth look cleaner also.

The ICU Attending just came in and checked him out. . . "Jack's looking more and more like someone who shouldn't be in the ICU." This was as I was laying in Jack's bed wresting with him. Jack won by the way.

Jack's energy has exploded and he is generally a happy, happy little kid...in heart failure, awaiting his second transplant.

Always back to reality.

Coops doing fine, I took Friday off and after spending half a day with Jack went and picked Coop up from school. We then went to the MOA and went on rides, had treats and rode the light rail train a few times. It was good and by the time we left to go to the hospital to do the switcheroo with Mom, Coops was bushed. As I pulled out of the parking ramp at MOA I looked back and Coops was slumped over sawing logs. When we got to the Hospital I had to wake him up...not a good idea! Grump, Grump, Grump

In any event, it was a good day and we had fun.

So, still holding steady in the ICU. Officially Jack is a 1B right now, his status will officially change to 1A on Jan 31st, six weeks after he was hospitalized for RSV. I guess that's the protocol to assure the lungs have healed and there is no undue risk of pulmonary hemoraging during surgery.

So, our crazy life continues living at the Hospital and IGH and shuffling jobs, kids and all the other necessities of life along with it.

More to come...

TTFN

Tuesday, January 15, 2008 12:42 PM CST

“Holding steady”

It seems that Jack has turned a corner and is feeling a lot like his old self. Not the heart failure old self, but the little mischievous boy who has lots of energy, old self. The new, temporary IV drug that was added to his mix (Nesiritide) has helped relieve all of the extra fluid on his body. He no longer really looks like a Buddha doll. He’s peeing like a prize-winning race horse and his kidney function is at the high end of normal. His kidney function hasn’t been “normal” for well over a year and a half.

We got an update from the transplant coordinator on his status. He will officially be a 1A status on Jan. 31. That is six weeks from his initial diagnosis of RSV. They need to wait that long to ensure his body is clear of infection. Once his status upgrades to 1A, he is first to receive a donor heart for our region. Right now, he’s hanging out and getting “tuned up.” He actually no longer minds the Bi-Pap mask. He actually asks to put it back on. We think it does help take some work off of his heart and therefore his lungs and it makes him feel better. The good thing is he gets to be off of it for as long as he can tolerate it. He gets to go on his car rides around the floor and that seems to make him happy. It also keeps him working his muscles so he doesn’t get weak just lying in bed. It’s so funny watching him drive around in his little car with hands on the steering wheel. He acts like he’s going for some country drive looking at the same scenery as if he’s seeing it for the very first time. Whatever makes him happy…

Coop is getting a little tired of his lifestyle. He misses Dad and Jackers and is probably sick of just spending time with Mama. He still has a little cold and manages to let you know a couple of times an hour (“Oh, I am sooo sick”). Just like a man…

The boys have been collecting some “get well” gifts from their friends and relatives. They think Christmas lasts forever. Yesterday, Cooper showed up at the hospital with a portable tape player with a microphone. Thank you, Aunt Brenda. We have listened to B-I-N-G-O over and over and over and over again. We have also watched “Alphabet Jungle” so many times that it is ringing in our dreams. Whatever makes them happy.

Thanks for the continued prayers – we need them!

Jack going out on his country drives ….



Jack auditioning for “Top Gun”




What, you are sick of Elmo?


Not too much off the top!

Monday, January 14, 2008 7:37 PM CST

These are my beloved sons, in whom I am well pleased. A slight adjustment to fit my situation, drawing from one of the most powerful phrases in the Bible. This short phrase from the Book of Mathew says so much about both God and Jesus, father and son and their relation to each other. I think it’s such a beautiful phrase, full of simplicity and elegance, truly expressing the loving admiration between a father and son. It’s a great example for us earthly fathers to emulate.

I have been both a father and son and know this equation from both sides. To hear this from your father instills the quiet, unshakable confidence needed to get through life’s challenges. It’s a blessing that only a father can give to his son. Just as our Father gave to his Son. As a father I silently say a prayer, this time from the Old Testament Book of Numbers, “May the Lord bless you and keep you. May the Lord make his face to shine upon you, and be gracious to you. May the Lord lift up his countenance upon you, and give you peace.” asking for Our Father to give me the strength to be a good father and, regardless of my failings or successes in that endeavor, to nevertheless bless my boys. I then kiss then on the forehead and give them my blessing sending every ounce of strength I have to them.

My son Jack has been through a couple dozen medical procedures in his short three year of life…some major, some minor. After each he has had issues, often nuisance type, arise that has made recovery incomplete and/or longer than previously thought. Jack has had a different path to walk, one that most, including I, would consider difficult, unfair, demoralizing and cause to be angry. However, Jack keeps his balance and “is the happiest kid in heart failure you’d ever meet.” He reminds me that ‘fairness’ is a state of mind that has little to do with the future. His actions remind me that you choose your attitude everyday and that largely influences how the world reacts to you. Positive thoughts beget positive things. Is this a spongy slogan from the 60’s? Could be, but fads are usually just overreactions to the renewed discovery of a universal truth. The lessons you learn from a three year old…I am so pleased.

Cooper is tall, solid and strong three-year old who has the energy of several and likes to play rough. The more he is being thrown around, or tackling someone or running after something the better. If he slips on the ice and bites his tongue, he says “ouch” and spits blood out and keeps playing…running faster and yelling “Dad catch me”. The typical youthful, without fear energy of a toddler? – Maybe, but Cooper cultivates this 200% testosterone soaked rough boy play when he’s around Jack. Coop doesn’t reciprocate when attacked by Jack; however, Coop sternly and in an even voice says “no, Jack” and backs away. He knows that he could easily and inadvertently hurt Jack. So, he still plays with him but protects his brother at the same time. This has come in other ways also. For example, crying out in his sleep “Jack is hurt, he needs an ambulance to go to the Hospital” 48 hours before Jack actually does need to go to the Hospital. There are plenty of antidotes of this special relationship between twins…maybe this is another. I think it’s a little more…it’s demonstrated empathy, protection and absolute loved expressed by a three year old to his brother. If he can do that why can’t I? The ability to be free, unencumbered by petty fears and express how you really feel is what we all should strive towards, again an example set to me by a three year old and how can I not be pleased by this?

I’m really saying I love these little buggars. My love is absolute and forever. They teach me about the meaning of life everyday. They have taught me to not be afraid. They have taught me that human contact and love are what’s important. When Cooper says “don’t go to work Dad, stay home and play” I’m reminded that the natural order of things is to stay home and be with your family…in other words, work, jobs, careers are a means to an end, not the other way around. I work to live and provide, not live to work.

I’m looking for inspiration and hope as we prepare to place Jack on The List as a 1A. We had the benefit of these past 4 – 5 months to live an enlightened state of denial. We knew Jack needed a heart, but he was doing so well at home on the Milrinone, going school and growing, that the idea of another heart transplant was an intellectual exercise whose reality was lost in the fog of the future. That fog is gone now and we’re preparing ourselves for the battle. We’re fearful, hopeful, determined and resolute. We will keep the end goal in mind; that is to see Coop and Jack skipping down the path together going to school, making friends, graduating, going to college, beginning their lives’ passions, finding brides and starting their own family.

Through this whole process Robin or I have always been with Jack. Always! We never leave him alone for more than a couple of hours at a time, which happens once in a great while and only when we are assured that he is surrounded by caregivers who care. There are many reasons for this belief; it’s not to win an award for parental martyrdom, but it basically boils down to the covenant we entered into with God when he gave us these children to raise. We honor Him and him by being there. Our comfort and fatigue are second or third tier concerns. We assure that Jack is always viewed as a young boy who has a bad heart, not a pathetic patient who is in constant need of help who should be looked at with pity. We assure Jack’s fullest potential is always considered, and that his heart issues are merely obstacles that must be breached in order for him to reach it. Jack and Cooper are boys, they will grow into men, and they will be good ones.

We have walked this road once, we could not have walked it alone. As we get ready for this second fight, I would like to ask you to pray, often, for Jack and Cooper. Tell others to do the same. We’ll raise an Army of Prayer and God will answer.


Medical Update…

In the past 48 hours Jack has greatly improved his respiratory state. He is on the BIPAP machine on and off during the day as he begins the weaning process. His kidney function has greatly improved also, with his Creatinine coming down to .89 today…yes, that’s almost normal! We have gotten use to the 1.30’s and 1.40’s as normal, wow, this is great.

This morning Jack woke up around 5’ish and sat up in bed. He had the BIPAP mask on so he looked like a jet fighter pilot wearing his oxygen mask. Jack looked at me and his eyes were so big, so bright and so full of life. I knew then that he was feeling better. That he had turned a corner on fighting this virus.

It turns out this afternoon that the quick culture for RSV came back negative. They’ll probably have to wait a few more days to officially declare its over, they might even do a bronch to make sure, but it’s a huge step in the right direction.

Take care

TTFN

Monday, January 14, 2008 7:29 AM CST

From Dad

"Still in the PICU"

Jack's rapid response RSV culture came back negative last Monday, but the longer culture came back positive on Thursday...so he still has it. He'll get another test today.

However, he is doing pretty darn good. During the last half of the week Jack seemed to hit a plateau. He still needed the BIPAP to help him breath and maintain O2 concentrations and he had developed a slight bi-lateral pleural effusion. Another leaky chest. This weekend the team decided to try another medicine (nesiritide) to help him draw 'leaked' fluid into his blood stream and out through the kidneys. We started him on Saturday, at the absolute lowest dose.

It seems to have worked.

Sunday his weight was down and his effusion was pretty much cleared up. He was able to be off the BIPAP for extended amounts of time and the kid is just full of energy. We decided to do it another day to get any remaining fluid out and we're just awaiting lab, x-ray and exam results to see how's he doing.

Jack's spirits are good, he laughs and kicks and plays and generally has a good time, albeit he is rather bored at times just sitting in bed. We try to help by taking him for car rides and wrestling, so it helps some what.

Coops is doing fine. He's actually getting used to the strange schedule his parents keep, where he is switched off several times a day between Mom, Dad and Nanny Twee. Coops and I started a "Dad and Me" class on Thursday evenings with the local school district. He calls it "Art School" - why? I have no idea...but anyway, it was fun. We did this last year for a semester also and he loves it. It's a chance to get out, play with other kids and be around Dad for a while.

Coop and I also got a chance to go ride the trains this weekend. He loved it and we had long, lengthy discussions on whether we were riding 'Thomas', 'Percy', 'Duncan' or 'James.' We both agreed it was 'Gordan' or 'Rusty' though. (He loves 'Thomas the Train') We got off at the Mall of America and went through Underwater World and got to touch the stringrays and baby sharks. Coops had a great time and on the way to the Hospital, to do the switcheroo with Mom, he was slumped over, fast asleep in his seat. Just plum tuckered out.

Anyway, things are normal in this strange, mixed up circumstance we find ourselves. Hoping this week brings more healing and progress for Jack. (Which by the way, we're a little confused on what Jack's status is...a 7, a 1B or a 1A. We've heard all three the past couple of days. Hopefully today we'll get a better, more definitive answer.)

TTFN

P.S. Interesting news release from the U of M today - they grew a rat heart. The article quoted the researchers as speculating that replacement human hearts, and other organs, could be ready to be grown in 10 years more research time.

Monday, January 7, 2008 8:27 PM CST

From Dad

These are my beloved sons, in whom I am well pleased. A slight adjustment to fit my situation, drawing from one of the most powerful phrases in the Bible. This short phrase from the Book of Mathew says so much about both God and Jesus, father and son and their relation to each other. I think it’s such a beautiful phrase, full of simplicity and elegance, truly expressing the loving admiration between a father and son. It’s a great example for us earthly fathers to emulate.

I have been both a father and a son and know this equation from both sides. To hear this from your father instills the quiet, unshakable confidence needed to get through life’s challenges. It’s a blessing that only a father can give to his son. Just as our Father gave to his Son. As a father I silently say a prayer, this time from the Old Testament Book of Numbers, “May the Lord bless you and keep you. May the Lord make his face to shine upon you, and be gracious to you. May the Lord lift up his countenance upon you, and give you peace.” asking for Our Father to give me the strength to be a good father and, regardless of my failings or successes in that endeavor, to nevertheless bless my boys. I then kiss then on the forehead and give them my blessing sending every ounce of strength I have to them.

My son Jack has been through a couple dozen medical procedures in his short three year of life…some major, some minor. After each he has had issues, often nuisance type, arise that have made recovery incomplete and/or longer than previously thought. Jack has had a different path to walk, one that most, including I, would consider difficult, unfair, demoralizing and cause to be angry. However, Jack keeps his balance and “is the happiest kid in heart failure you’d ever meet.” He reminds me that ‘fairness’ is a state of mind that has little to do with the future. His actions remind me that you choose your attitude everyday and that largely influences how the world reacts to you. Positive thoughts beget positive things. Is this a spongy slogan from the 60’s? Could be, but fads are usually just overreactions to the renewed discovery of a universal truth. The lessons you learn from a three year old…I am so pleased.

Cooper is tall, solid and a strong three-year old who has the energy of several and likes to play rough. The more he is being thrown around, or tackling someone or running after something the better. If he slips on the ice and bites his tongue, he says “ouch” and spits blood out and keeps playing…running faster and yelling “Dad catch me”. The typical youthful, without fear energy of a toddler? – Maybe, but Cooper cultivates this 200% testosterone soaked rough boy play when he’s around Jack. Coop doesn’t reciprocate when attacked by Jack; however, Coop sternly and in an even voice says “no, Jack” and backs away. He knows that he could easily and inadvertently hurt Jack. So, he still plays with him but protects his brother at the same time. This has come in other ways also. For example, crying out in his sleep “Jack is hurt, he needs an ambulance to go to the Hospital” 48 hours before Jack actually does need to go to the Hospital. There are plenty of antidotes of this special relationship between twins…maybe this is another. I think it’s a little more…it’s demonstrated empathy, protection and absolute loved expressed by a three year old to his brother. If he can do that why can’t I? The ability to be free, unencumbered by petty fears and express how you really feel is what we all should strive towards, again an example set to me by a three year old and how can I not be pleased by this?

I’m really saying I love these little buggars. My love is absolute and forever. They teach me about the meaning of life everyday. They have taught me to not be afraid. They have taught me that human contact and love are what’s important. When Cooper says “don’t go to work Dad, stay home and play” I’m reminded that the natural order of things is to stay home and be with your family…in other words, work, jobs, careers are a means to an end, not the other way around.

We’re looking for inspiration and hope as we prepare to place Jack on The List as a 1A. We had the benefit of these past 4 – 5 months to live an enlightened state of denial. We knew Jack needed a heart, but he was doing so well at home on the Milrinone, going to school and growing, that the idea of another heart transplant was an intellectual exercise whose reality was lost in the fog of the future. That fog is gone now and we’re preparing ourselves for the battle. We’re fearful, hopeful, determined and resolute. We will keep the end goal in mind; that is to see Coop and Jack skipping down the path of life together going to school, making friends, graduating, going to college, beginning their lives’ passions, finding brides, starting their own family; growing with each step and soaked in happiness. What else could a parent want for their child?

Through this whole process Robin or I have always been with Jack. Always! We never leave him alone for more than a couple of hours at a time, which happens only once in a great while and only when we are assured that he is surrounded by trusted caregivers. There are many reasons for this belief; it’s not to win an award for parental martyrdom, but it basically boils down to the covenant we entered into with God when he gave us these children to raise. We honor Him and him by being there. Our comfort and fatigue are second or third tier concerns. We assure that Jack is always viewed as a young boy who has a bad heart, not a pathetic patient who is in constant need of help who should be looked at with pity. We assure Jack’s fullest potential is always considered, and that his heart issues are merely obstacles that must be breached in order for him to reach it. Jack and Cooper are boys, they will grow into men, and they will be good ones.

We have walked this road once already; we could not have walked it alone. As we get ready for this second fight, I would like to ask you to pray ... often ...for Jack and Cooper. Tell others to do the same. We’ll raise an Army of Prayer and God will answer.


Medical Update…

In the past 48 hours Jack has greatly improved his respiratory state. He is on the BIPAP machine on and off during the day as he begins the weaning process. His kidney function has greatly improved also, with his Creatinine coming down to .89 today…yes, that’s almost normal! We have gotten use to the 1.30’s and 1.40’s as normal, wow, this is great. So you know the drill, pee, pee, pee ... the more yellow, the better.

This morning Jack woke up around 5’ish and sat up in bed. He had the BIPAP mask on so he looked like a jet fighter pilot wearing his oxygen mask. Jack looked at me and his eyes were so big, so bright and so full of life. I knew then that he was feeling better. That he had turned a corner on fighting this virus.

It turns out this afternoon that the quick culture for RSV came back negative. They’ll probably have to wait a few more days to officially declare its over, they might even do a bronch to make sure, but we're surely headed in the right direction.

Take care

TTFN

Friday, January 4, 2008 ~ 11 PM CST

Friday evening update ~~

“Not ABC’s, but RSV”

Yes, we finally got an answer today. Jack has RSV. One of his cultures came back positive. They did test him several times for RSV and the tests came back negative, but we finally got one back that is positive. It probably doesn’t change the management of his care. RSV pretty much has to run its course and the lung doctor said today he thinks Jackers is on the tail-end of it. He is still wearing the bi-pap machine to help keep his lungs open. Today he didn’t look like he felt well at all. He just wasn’t himself. He hates wearing the mask and head contraption and on top of that he’s stuck in bed for most of the day. He did get to go on a wagon ride today initiated by one of his favorite nurses, Tami. It wasn’t a long ride, but he enjoyed a change of scenery.

The other issue is that this probably suspends him again from the transplant list until he is over it. You certainly don’t want to transplant a patient who is having respiratory issues. The lung doctor said that everyone gets RSV at some point in their lives and this is the season for it. But it is something that takes its toll on a little guy like Jack who has a suppressed immune system. Luckily, we caught it right away and he has had two years of synagis shots which help the severity of it. It also means Cooper has it and Mama too. Cooper is almost well again, Mama is still working on getting well, but she hasn’t got as much rest as she needs.

The name of the game right now is rest and healing -- sounds good to us.

Please keep those prayers coming!


One year ago...







This past spring...

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