Monday, April 14, 2008

Founders Event at CMC Legacy

Can you believe it's been over 3 weeks since Keegan's been to the hospital? I hit my major panic a few days ago and am starting to get used to it a little more now. My one-sided conversations to Gray about problems were starting to get a little neurotic...for example, "Do you think he's getting skinny? I think he's getting skinny. He must be losing weight. I don't think he ate enough today. Do his eyelids look swollen to you?..." and on and on. The eyelid thing may sound weird, but they always ask us that at clinic. If his kidneys were to start having issues again, we would likely notice swelling there first. At any rate, he's happy as usual, and I'm sure everything will be fine when we go in next Wednesday.

Last night, Gray and I were asked to speak at the unveiling of the Founders Wall at the new Children's Medical Center at Legacy in Plano. Legacy will be open for ambulatory services (out-patient stuff) next week, and the ER and rest of the hospital will begin admitting patients in August. It will be a great relief to us knowing that a Children's ER is so close that we could get Keegan there faster than calling 911. It's literally less than 2 miles down the road. Also, we'll be able to have his monthly blood draws there once we're on a quarterly clinic schedule beginning the end of this year. We made sure to make a plug for having transplant clinic there, too! The hospital is gorgeous, and while we hope to never need it besides labs, it's so nice that I don't think we'd mind.

We were thrilled to be asked to speak and brag on Keegan at the event. We saw a few familiar faces, including Dr. G! She said she cancelled her plans to come out and see us, which was so thoughtful of her. We love every opportunity to see her and talk about the amazing things happening in the world of cardiothoracic surgery and transplantation. She truly is a brilliant woman, and we're so glad to know her. We ate dinner with the construction heads from Austin Commercial who were the GCs on the project (thanks Kyra for putting Gray in his element there!). The hospital administrator and his wife were also at our table. They were the nicest, most encouraging people. We also were able to meet the CFO for Children's, the architect for the hospital, the head of the Board of Trustees, and so many more people working to make this wonderful hospital a reality.

After we spoke, we were able to tour the hospital and see one of only four MRIs in the country with ambient technology. This thing is insane. The kids can change the color of the lighting in the room, choose a "screensaver" of types to play on the walls, watch their favorite DVD, or listen to the music from their own MP3 player piped into the room. I know it will make a scary experience so much more pleasant for many kids.

Several people asked what we said in our speech, so I'll post it below. Don't forget to check out the new pictures we have posted. Thanks again to Kyra at CMC for inviting us to be a part of this event. Lastly, please keep Gray's grandfather in your prayers. He is battling a number of medical issues, and your prayers would be greatly appreciated. Take care, and we'll post next week after clinic.

Speech at CMC Legacy Founders Wall Dinner :
Thanks to the amazing family of doctors, surgeons, nurses, and staff at Children’s there is a happy 6-month old boy getting ready for bed less than 2 miles down the road. That beautiful boy’s name is Keegan, and he is our son. At seven days old and weighing only 5 pounds, Keegan became the smallest and youngest heart transplant performed at Children’s and in Texas. He is possibly the smallest in the country, and today he is doing extremely well.

I had what seemed like one of the easiest pregnancies imaginable, and by all measures, we were expecting a healthy son in September of last year. In July, a longtime family friend and perinatologist offered us a 4-D sonogram as a gift. What began as a fun chance to see our unborn son, quickly turned into something unexpected and shocking. Our friend diagnosed Keegan that day with a congenital heart defect known as Tetralogy of Fallot. Tetralogy is a complex but not uncommon defect characterized by four distinct malformations: a hole between the lower chambers, an aorta that pumps blood through that hole, thickened muscle surrounding the heart, and most significantly, a small to closed pulmonary artery. This ultimately means that the oxygen-poor blood returning to the heart mixes with the oxygen-rich blood from the lungs and gets pumped back into the body. Over the next two months, we had a series of fetal echocardiograms and met with doctors at several hospitals, but we couldn’t get a straightforward answer about just how bad Keegan’s heart really was. Then we went to Children’s. We met Dr. Steven Leonard, a cardiothoracic surgeon, and Dr. Claudio Ramaciotti, a cardiologist. They told us that Keegan’s heart could be repaired with surgery, but it would have to be sooner than later. With not much time left to prepare, the doctors helped us form a plan for Keegan’s birth and treatment before he was even born. On September 12, we welcomed our wonderful son into this world. It soon became apparent that his condition was much more severe than we had anticipated. He was transferred to Children’s before he was 3 hours old, and the next day, what should have been a four-hour surgery turned into 10. Every cardiothoracic surgeon at Children’s was called in to help. In the end, the surgeons believed the defect had been repaired, but Keegan was on ECMO, a type of external heart/lung bypass.

After resting on ECMO in the Children’s CVICU for 5 days, the doctors discovered that a hematoma on the muscle wall separating the bottom chambers of Keegan’s heart had bled out and all but obliterated the ventricles. A heart transplant would be his only option, and he did not have much time. His kidneys were on the verge of failing and other major organ failure would follow quickly. As much as we had prepared for Keegan’s birth and heart defect, transplant was never remotely on our radar. We didn’t know much about transplants, but we knew enough to realize the rarity of finding a heart for a five-day old who weighed probably less than 5 pounds on life support. Keegan’s time was running out, and we were well aware that people wait months and years, not days for organ transplants. Only 2 days later, however, on Wednesday, September 19, we received a miracle. Unfortunately for another family, a heart became available for Keegan. Every nurse, doctor, and staff member it seemed wanted to be in the tiny conference room when Dr. Kristine Guleserian told us the wait was over, and they filled the hall in the ICU waiting to celebrate with us. Unlike most parents, the greatest moment of my life was not the day my son was born; it was the first time I saw his amazing new heart beating in his chest. We spent only two more weeks in the CVICU and less than 1 week on the recovery floor. Keegan went home with us when he was exactly one month old and has been growing ever since.

Keegan’s fight is not over. He will remain on immunosuppression medication for the rest of his life to prevent rejection of his heart. Over the last five months, he has exceeded everyone’s expectations. He weighs over 14 pounds and loves to eat. So far, he has been healthy and had no rejection episodes. He’s gone from 15 medications a day to 9. He’s gone from two clinic visits a week to only going to the hospital once a month, and by next fall, he’ll only go back quarterly. Keegan continues to amaze the doctors and nurses at Children’s. He requires less medication than expected to maintain a suppressed immune system, and many believe there is a great likelihood that his body might not even realize it’s not his heart. Keegan has met every developmental milestone right on cue. He is a genuine rock star when he arrives at the hospital. Everyone wants to see him smile. We may be biased, but he seems to be the happiest baby you’ve ever met. More than likely, he just realizes how blessed he is and is grateful.

We are ecstatic for the opening of this new addition to the Children’s family. Living less than two miles from here, it will be a great relief to know a Children’s ER is so close should we need it. Keegan will have monthly blood draws for the rest of his life, and having them drawn here will be much more convenient than driving downtown. Maybe even one day, we’ll be lucky enough to have transplant clinic here. We owe our son’s health and life to the staff at Children’s. For them and for your contributions to this new facility, we can not say “thank you” enough.