HELLO ALL
This is a letter that I have been meaning to write for a very long time but never sat down and put it down.  Today, the day that I post this marks five years since TJ entered the hospital.  We consider this date his “Heart birthday”. Although a lot of time has passed (speeding time) the events of that late night at Children’s Hospital still seem so vivid that when I think about it, it still brings tears to my eyes and a sick feeling in my stomach and throat about how close we were to losing him.  It seems like it was last night.  There are many events in one’s life that always stand out…birthdays, weddings, births and funerals are examples.  That night is one for me.  I, and all of us, for that matter are blessed that for whatever reason TJ survived what was a very life threatening event.  Honestly, If we had lost him that night I’m not sure how I would have filled that hole in my heart and not really sure what kind of person I would have become. To this day, Linda still can’t talk about the events of that night.  The time in the hospital was one that affected all of us that got to witness it in so many ways. I have had thoughts about what to put in this letter for the past five years so this will most certainly get lengthy and wordy. I apologize in advance for all of my rambling.  I will try to put all of these random thoughts into bullet points. So here goes.

TJ UP TO NOW
After TJ got out of the hospital he was able to go back and finish the last couple of weeks of kindergarten.  He did sit out sports for that summer though.  Now he is a fifth grader just waiting for the last few weeks of this year to get to summer.  He doesn’t enjoy school at all but he does get excellent grades and we are very proud of him.  He also has been cleared to do sports…he has done soccer, KWAA baseball and tackle football playing for the Chiefs mostly as a defensive line backer, the same position as his favorite player, Clay Matthews of the Green Bay Packers. Watching him play has been fun and he really doesn’t even complain about the two hour practices in the heat of August nor about all the bruises he gets. He wishes he could play football year round. As of now, the only medication he has been on is a drug called Enalapril for mild blood pressure control.  The Dr. keeps him on it just as a precaution but has not increased the dosage.  As he phsically gets bigger...he will eventually just ween himself of it.  Later this spring, Dr. Fletcher, his cardiologist will do another EKG/ultrasound and see how he is. He still remembers a lot about his time in the hospital and makes comments every once in a while about the whole thing.

KAITLYN
Kaitlyn was in fourth grade when this happened and is now a freshman at Marian High School and has been rockin’ a 4.0 GPA all year.  She has grown up to be a very sweet and pretty young lady. She always ends a conversation or a good bye with an "I Love You". She played select soccer for a few years but has chosen not to play this year and concentrate on her homework…of which she spends most of her free time doing.  She also does some babysitting in the neighborhood as well. She doesn’t talk much about TJ’s hospitalization but just recently signed up to be a volunteer at Children’s Hospital and hopes that they can start using her this summer.

CHILDREN’S HOSPITAL
The experience we had at Children’s is one that can not be easily put into words.  Up until the time we got into the emergency room that night our contact with Children’s was negligible. Somehow the right people with the right experience made the right decisions in the right order with the right tools to save TJ. There really was no other protocol other than the use of the ECMO machine (of which there are only two hospitals in the state that have them) that would have saved TJ.  Every time we go back to Children’s for any reason it feels like old home week. People still remember TJ and his story. I still cannot thank all the doctor’s, nurses and every other employee that had anything to do with TJ’s case enough.  I do have to say a loud shout out to Drs. DeMare,  Hammel, Fletcher, Erickson, Duncan, Kadlac, Cherie Lytle, “SuperNova”Kim and Ashley in the PICU, Sheila, the EKG/Ultrasound tech,  Kim, one of the perfusionists Kathy Greco and all the nurses in the hybrid cath lab….All the nurses in the emergency room, the PICU, the hybrid and the 5th floor, everybody at the Children’s Foundation, Roger, Jane and Alyssa. Children’s keeps investing into what it takes to be the best hospital for kids in not only the state but the whole region.  Just two days ago, Dr. Hammel (the same Dr. that put TJ on the ECMO machine that late night long ago) performed the first pediatric heart transplant at Children’s on a two week old child…the first ofwhat I am sure to be many successful surgeries to come. Previously kids needing heart transplants had to go to St. Louis.

CHILDREN’S MIRACLE NETWORK
This brings me to the Children’s Miracle Network.  About four months after TJ’s hospitalization, Children’s nominated TJ to the Children’s Miracle Network and was consequently selected by the network to be Nebraska’s 2009 Champion.  What this consisted of was to help tell TJ’s story and his experience at Children’s to anyone that would listen. Believe me, I have told the TJ’s story hundreds of times.   We also got to go to the CMN celebration in Disney World in Orlando in March of 2009.  We got to meet the Champions from all of the other 50 states, Canada, England and Australia.  It was amazing to meet all of these families and hear their stories of survival and the various afflictions that affect children. After Disney World, we also got to go to Washington D.C. and meet with our Senators and Congressman, got a private tour of the Capitol, got to go tour the White House and meet President Obama.  TJ got to shake his hand and both Kaitlyn and TJ got to play on Sasha and Malia’s playset just yards from the oval office. I could write much more about the details of the trip but I must say it truly was the trip of a lifetime.

HANNAH HETHERINGTON
Hannah is TJ’s cousin and the daughter of my sister Ann and her husband Jack. She is a very sweet and smart girl and will go far someday.  She used TJ’s story as the subject of her 8th grade project for the end of that school year…little did she or her family know she was going on a long journey of her own.  Her story is a long one that I will try to condense.  The following spring, (2009) at the age of 14 Hannah was also diagnosed at Children’s with cardio-myopathy…and although TJ’s was sudden onset brought on by a virus, Hannah’s was genetic and was at a stage where surgery was no longer possible.  So here we were back at Children’s seeing the same Dr’s and nurses that worked on TJ working on Hannah. They installed a device that was both a pacemaker/defibrillator.  They were told that at some point, her heart would fail and would need a transplant.  Since pediatric heart transplants weren’t being done in Nebraska they went down to St.Louis to look over the place in case they had to go there but the plan was for her to reach the age of 16 where they might want to attempt a transplant.  So forward on two years to April of 2011. Hannah’s heart was beginning to fail at a very fast rate…within a few weeks she was on the national heart transplant list and five days after being on the list she got her new heart on May first so next month marks her 2nd “Heart Birthday”. At the time she was the youngest and smallest heart transplant done at the UNMC.  Hannah has been a perfect model of what a heart transplant patient should be. She takes amazing care of herself and follows the regiment of pills twice daily and has an amazing appreciation of what the heart donor and family have sacrificed.  They have been strong advocates of the Heart Association and Donate Life Nebraska. You may have seen Hannah’s great smile in newspaper ads and TV commercials for DonateLife. She was also the Heart Association’s 2011 Heart Ball Princess. You can follow and read more of her story on CaringBridge. 

THE AMAZING ECMO MACHINE
The extracorporeal membrane oxygenation (ECMO) machine that was used to save TJ’s life was truly a godsend.  Children’s has invested heavily in the program and has fully staffed it with their own employees. Back then, they were using contract personnel from around the country when they needed them. Since then, Children’s and the UNMC have used the ECMO to save many kids.  I know it was utilized to save kids suffering from the H1N1 flu back when it was prevailing.  Some coincidences also come to mind…In addition to them using the ECMO machine on Hannah when she was at the UNMC, last August, the 23 year old son, Michael Crowe, of TJ’s pre-K teacher at St. Stephens had the same problem…a virus attacked his heart and within a matter of hours was also on ECMO at the UNMC…another story of an amazing miracle. His story can  be found on CaringBridge.   

  And just this past December, Angie Jorgensen who is my sister Ann’s (mother of Hannah) sister in law’s sister (I know, reading that is confusing) also had a sudden onset of heart problems and was put on ECMO.  Her story is also on CaringBridge.

Both Michael and Angie’s stories were in the press and Michael made an appearance on the Katie Couric show.  It is a small world.

CARINGBRIDGE
The CaringBridge site was a life saver for me…first to get information out to family and friends about what was happening with TJ. I had no idea of the web site’s existence until the second day of TJ’s hospitalization b/w of a friend who had a child with heart problems as well and had been at Children’s. The second was it was cathartic for me to just write down what was going on around TJ. It was a way for me to get through some of those long days and late nights even though I was exhausted. I was surprised how fast the word had spread…I heard from old classmates and co-workers I had not even talked to in many year’s. Since we used it, CaringBridge has made many improvements including the ability to add many more pictures to your story…back then we were limited to twelve pictures at a time and now you can post up to a hundred. I will post a recent picture of the kids to CaringBridge after I post this note. It also ended up being a great way to document everything for TJ to look back on someday. We have followed many other people b/w of CaringBridge since then. It is an amazing communication tool.

GIVING BACK WHAT WE CAN
Since TJ’s hospitalization, both Linda and I have tried to make a concerted effort to give blood many times a year at the Red Cross. TJ used many units of blood thise first few days in the hospital. We also joined a new group at Children’s called the Children’s Family Advisory Council. We have been on it almost 4 years now. It consists of other families that have had children going through other life threatening illnesses and I am in awe with how much some of these parents go through, especially the ones that have children with cancer and birth defects. We have also helped and continue to donate at the annual radiothons sponsored by Children’s. So I am asking you to think of Children’s when it comes to giving. Without that facility and its doctor’s and employees…I can’t imagine how many lives they save…not only for the kids but for their families. I can’t imagine what a family must go through when they lose a child…and every time I read of a life lost due to child abuse it just rips me up.

MELISSA BOHAN and THE BOHAN’s
Melissa is Kaitlyn’s BFF and have know each other since they started walking. The Bohan’s used to live next door to us and Melissa and Kaitlyn are pretty much joined at the hip…probably for life.  I don’t think I have ever seen a more close friendship. TJ grew up with having Melissa around and he treats her like a sister and she really looks out for him as a brother.  Unfortunately he ends up being the third wheel being around his sister and Melissa but they accept him pretty well. Jim and Lyn Bohan are also my and Linda’s great friends….they were really a great source of support during all of TJ’s hospitalization…and have been very gracious in listening to all of my stories about TJ and Hannah…as well as all of my bad jokes and quirks. We do miss them as neighbors.

SUPPORT
Last but not least, I also need to reinforce how much support my parents, Ernie and Carol Pfannenstiel were during all of this. I can still picture my dad walking the halls of Children’s with his prayer cards.  Mom was the first one at the hospital late that night when we called them. He and TJ have a great relationship.  My brothers and sisters all spent a lot of time with us and my brothers all pitched in to help with our business during that time as well.  Linda’s family even though many of them live away from Omaha all came and visited. Her sister Susan was one of the first one’s at the hospital when she got that call late at night and her sister Charlene got on the next flight from Denver.  Our church  and school community at St. Stephens also stepped up…especially the parents of TJ’s classmates in Mrs. Keller’s kindergarten class.  Even a lot of our business customers all kept up on TJ’s story and we got many visits and cards from many of them.  I can’t tell you how much all the support meant to all of us.

TJ’s FUTURE
You got me??? I know that God has a reason why he was allowed to survive…just know that we are blessed with every day we have with him. The world is really his oyster.  He has turned into a sweet and very good looking boy if I must say so myself.  He has a great sense of humor, is very smart (even though he doesn’t enjoy school at this time) and is just a joy to have around. 

THE END
OK, I don’t know what else to say except that after I post this I will come up with a hundred other things I should have said and people I should have remembered.  Forgive me.  I just wanted to somehow commemorate this 5th anniversary milestone of what we call his "Heart Birthday".  Even this morning at a meeting, one of our dear friends remembered this day and mentioned it to us. Thanks to all who may have made it this far in my diatribe. Please understand that we were able to witness a miracle and that we are truly blessed.  Take care of yourself, keep smilin’ and have a great life.

TJ and Kaitlyn's dad and mom....Timothy & Linda Pfannenstiel