An extra special visit

*Warning - emotional post.* There is my disclaimer.

I get very emotional every year around the time of Cooper's birthday simply because I reflect on how scary he started his life 12 years ago on Jan. 7, 1998. He is so on to me that he asked me today if I had cried yet. Although we are still fighting some minor battles with his cardiac anatomy and pacemaker, I'm not sure I believed 12 years ago that he would be as happy and healthy as he is today. I wanted to believe it, but I think I was afraid to be overly optimistic.

I have Cooper to thank for pushing me into the nursing field as well. As I take care of other cardiac kids now, there is such a sense of giving back and I sometimes feel guilty that I get paid for what I do. And, every once in a while a patient comes along that just grabs my heart and won't let go. Little Matthew is a case in point. With his mom's permission, I get to share his story.

Matthew lives with his family not too far from us and he was like any other active toddler, except that he just couldn't seem to keep up on the growth chart. Despite a huge appetite, the poor kid just couldn't gain weight. He eventually found himself in the failure to thrive clinic for repeat evaluations, calorie counts and repeated weigh-ins. No one could find an underlying cause for his poor growth. At 16 months, he got some sort of flu bug and wound up at urgent care and then back at his pediatrician's office for follow-up. Out of the clear blue, the doc heard a gallop when listening to his heart--almost always indicative of fluid overload in and around the heart.

Off to Children's the family went and after an EKG and echocardiogram, he was diagnosed with Scimitar Syndrome--a very, very rare heart defect in which an unneeded extra vein connects the pulmonary venous circulation and the systemic venous circulation. The extra vein drains into the inferior vena cava instead of into the left atrium of the heart. In other words, two systems that are supposed to run parallel to each other were intertwined. This also resulted in too much pressure to his lungs. And, as if that wasn't enough, he had an aorta that was going the wrong direction and was encircling his trachea, which would have eventually been disasterous. Every calorie this kid was eating was sustaining this crazy circulation pattern in his body.

In mid-November, Matthew had surgery to repair his many defects and the sugery was incredibly successful. Things were moving along nicely and the breathing tube was pulled a couple days later. Unfortunately, he started a downward spiral and eventually was reintubated and the tube was unable to be pulled. He was taken back to the O.R. where a tracheostomy tube was placed creating an artificial airway. After many more weeks in the hospital, my little buddy was able to come home. Doctors are very optimistic that the trach will be able to be removed in the coming months, but until then, he does not leave his house other than for appointments.

I fell in love with this little guy right from the start and quickly signed up to be one of his primary nurses meaning that if I was working, he was all mine. :) His parents are amazing with him, providing so much love and yet keeping some structure and normalcy for him.

Today, the kids and I got to go visit Matthew. After dousing my kids with hand sanitizer, we stayed and played with him for an hour today. We brought puzzles and books and toys and yet the greatest gift we gave him was an hour of our time. He warmed up to the kids so quickly (and recognized me enough to greet me with a hug . . . oh the tears in my eyes!). He is now walking again and doesn't even seem to notice his trach and the ten feet of hoses and cords attached to his neck. He is just the sweetest little boy who seems to know that he is lucky to be alive. I know that sounds weird, but I've had the same types of experiences with Cooper over the years. He has a twinkle in his eye and a smile that melts you instantly.

After we left, the kids were kind of quiet and reflective. Cooper finally told me that the whole experience made his day and the others said they wanted to go back sometime. I'm hoping I can babysit him sometime soon so his parents can take a much needed break together! Stay tuned. :)

Do they get any cuter than this?

Play time!

See if you can read his shirt :)

Happy boy

So playful

My new boyfriend