Today Starts a new Adventure

Today is the start of an adventure not only for TJ but for his sister Kaitlyn, Linda and myself. I'm not sure who all is going to read this but what i mean by adventure is that we are in for a trip of a lifetime. TJ, who is now 7 years old was chosen by Omaha's Children's Hospital and Medical Center to be Nebraska's 2009 Children's Miracle Network Champion. What this entails is that this afternoon, TJ will be given a sendoff for our trip at a press conference at the Wal-Mart in Bellevue, NE. Wal-Mart is a national sponsor of the Children's Miracle Network and all across the country similar ceremonies will be held for all of the other state champions. We will meet all of them in Orlando next week. The trip starts next Wednesday, March 18th and continues through the 25th. More on the trip later.

For those of you that don't know, maybe I should start at the beginning at what brought us to this point. It was almost a year ago already but it seems like just last month to me...except in slow motion. Last April 9th, a Wednesday, was supposed to be just another day. The kids had both been suffering from the flu off and on for a week or so. They would get better, go back to school and get sick again. TJ came down with it again on Tuesday the 8th and stayed home again. All day long he just had the dry heaves. He woke Linda up @ 4:00am on the 9th and said his "heart hurt". We attributed it to that he may have pulled muscle in his chest from his vomiting. But as it turns out...that was not the case. He saw his then pediatrician @ 11:30 that day and was sent home to get fluids and bed rest. She too thought that he had pulled some muscles in his chest. I know that this story is getting long and I do apologize. I wrote about this in much detail on a Caring Bridge website / journal that I kept during TJ's hospitalization and recovery. Here is the link: http://www.caringbridge.org/visit/tjpfannenstiel If you have a lot of time to kill you can read all that TJ went through. OK, to tell a long story short. We ended up at Children's emergency room late at night. TJ was in a lot of pain and distress and he ended up having a cardiac arrest right in front of us. They started CPR, rushed him upstairs to the Pediatric Intensive Care Unit (PICU) and put him on a ventilator...at this point we were told to leave him, not knowing we wouldn't get to see him for another 5 hours or so. During this time, Linda and I were all alone in a darkened waiting room with TJ just on the other side of that wall. Every 15 minutes or so they kept coming out and telling us that they were still doing CPR. I know, I too didn't think that CPR could be effective for that long but with a body TJ's size, that his ribs still aren't hard cartilage and with the help of the ventilator and an experienced Dr. performing the chest compressions all that time and with monitors telling them that yes, he was getting good oxygenated blood all the way down to his toes, it does work completely. Simultaneously, a decision was made by the on-call cardiologist to call in the ECMO team. The ECMO is a specialized type of a heart/lung machine and was TJ's only hope for survival. They put TJ on the ECMO which entailed cutting into the side of his hip and groin and inserting multiple tubes going up and down the major arteries in his body all while CPR was still being performed on his chest. At the same time, I started calling my family and Linda's family and they all started gathering at the hospital, again all of this in the middle of the night. Even Fr. Jim Tiegs, our parish priest from St. Stephens was with us through the night. We got to see TJ just before daybreak. It was a very hard sight to see...but oh so good to at least touch him again even though he was unconscious and would be for many more days to come. In the coming days we learned a lot of what was done on TJ's behalf and we can't even begin to thank the countless doctors, nurses, technicians and all of the rest of the staff at Children's. Many became friends. Dr's. DeMare, Hammel, Fletcher, Kadlac, Duncan, Erickson, Gumbiner, and Mysore all come to mind. Sheila, the EKG/Echo tech, Kim (who I called Supernova Kim) and Ashley and many other nurses in the PICU, Kathy Greco and the rest of the nursing staff in the cardiac/cath lab area, as well as Cherie Lytle in Marketing and Media Relations and Alyssa, Jane and Roger with the Children's hospital foundation all have supported us through all of this. Many thanks also to the perfusionists that ran the ECMO machine, especially to Kim who spent a lot of time answering all of our questions and to Randy who came from Nashville and was with us all five days TJ was on ECMO. They all feel like family. My family stepped in to help with Kaitlyn through these days. My dad, Ernie and mom, Carol were the first one to the hospital that night and halped with Kaitlyn a lot in addition to my sisters Kathy and Ann. My brothers Troy and Terry helped with a lot of the jobs so we could keep our business going. Linda's family also rushed to our side(Susie joined us that night as well) and although many of them live out of town they made the trip to Omaha many times to see TJ and support us. Even her sister Charlene from Denver got to Omaha within 9 hours after that late night call. I can't also forget our neighbor's Jim and Lyn Bohan and their daughter Melissa who is Kaitlyn's true BFF. They have been there through thick and thin and helped with Kaitlyn and kept her attitude up through all of this. Our customers have also been a great support through this...not only sticking with us and understanding our time commitments were to be with TJ during his hospitalization but also the many calls and e-mails of support. Many of our customers we have been with for years and they too feel like family. Last of all, I have to thank the St, Stephens church and school community. People came out of the woodwork and asked how to help. TJ's kindergarten teacher, Mrs. Keller was always very concerned how TJ was doing and visited often in addition to Dr. Dave Peters, St, Stephens principal, who coincidentally had a son who had a heart transplant and can empathise with the hospital experience. Mary Ann Maier, St. Stephens administrative coordinator always has an eye out for TJ. Mary Ann and her husband Jeff are also neighbor's and have become good friends and helped give us a good experience in Green Bay last November. Even TJ's first grade teacher ths year, Mrs Malone has been great support for TJ. this year. NEVER, EVER discount the power of prayer to help make TJ's recovery as complete and fast as it was...thus the miracle part of TJ's story. Although I have recounted TJ's story many times when talking to family and friends...I haven't written a word about all of this since last May. You have probably all heard about movie stars when talking about how they get emotional and can cry on command they say that they think of sad times in their lives. I was never really able to relate to that because I could never just cry on command...But our experience with TJ has changed all of that for me. All I have to do is just think how close we came to losing him, watching what his little beat up body went through and it just tears me up. Those of you that really know me know that I am not an emotional, huggy person. But even now when I think of those first few days of TJ @ Children's I get all teary eyed and a huge lump gets in my throat. Even earlier tonight, after we got the kids to bed, Linda and I were watching an episode of ER (something I haven't had time to watch in many years) and in it they talked about a heart patient on ECMO, the same kind of heart lung machine that TJ was on @ Children's and I really had a hard time hearing that all again.



Here it is, 3:00 in the morning and I keep writing. I have never written a blog before, although the Caring Bridge site was a little like a blog (and a lot like therapy for me) we have been asked by the Children's Miracle Network to do this to spread the good news of what the Network and it's sponsors and supporters do for the Children's hospitals across the nation. I will do my best to keep writing and will add pictures and even videos throughout the trip. I will write about how today's ceremony went @ Wal-Mart and relate more details about the trip in my next post.