Wednesday, January 25, 2012

Everyone Needs a Day Off

One of the most stressful times for me as a parent is Parker's pediatric cardiologist visit. Don't get me wrong, pediatric cardiologist are some of the best people on the planet. I am always amazed by how down-to-Earth, respectful, compassionate, intelligent, (insert your favorite positive adjective here) ped cards are and I'm not a huge fan of allopathic medicine. We've seen several ped cards in the last twelve years and I have loved each and every one of them. Still, I dread the visits more than anything else in my life. Fortunately, Parker only has to see them every other year now, but in some ways that makes the visit even more difficult.
I walked to Parker's school yesterday right before lunch to pick him up and then we walked downtown for bite to eat. We don't get a chance to eat together without the rest of the family very often so it is a big treat for both of us. Parker chose Esquire for a black bean burger. Now this probably sounds pretty awful for me to take my child to grab a veggie burger prior to getting a cardiac ECHO, but he eats healthier than most people I know and it is a fun place to go.
Eating at a bar before or after his appointment is starting to be a tradition. This is Parker and Rob playing billiards at Crane Alley after his appointment two years ago.

After lunch, Parker and I caught the bus to his appointment. The ECHO is first so the doctor has something to look at and it is the part of the appointment that bothers me the most. When Parker was just a baby I would nurse him during the ECHO. Both of us on the examining table and the sonographer being ever so sweet to try to work with us. Actually, the technicians have always thanked me for nursing him (as he grew older we would bring a portable DVD player or some favorite books) since it can be a horrible experience for everyone involved trying to get a baby to be still for 20 minutes or 60 minutes in some cases while they have goop on their chest and are being prodded with a transducer. While I don't have to cajole Parker into being still anymore, it is hard to hear the whoosh whoosh instead of a proper thumping and I used to watch the screen to learn as much as I could, but now I avoid the screen for fear of seeing something. Yesterday the sonographer asked Parker is he has been short of breath, this sends my mind into all sorts of places I don't want to go. No, he hasn't shown any signs of anything wrong EVER. Yet still they told us he needed open heart surgery at two and a half years old. Did the sonographer see something? I hate trying to read the technician as much as I loathe to look at the Doppler imaging of my child's heart on the screen like a growing Midwestern storm.

After the half hour ECHO, we wait and wait and wait. Over an hour, in an examining room, not the waiting room. We've been forgotten at a pediatrician appointment before so we start to get a little nervous. We open the door a bit and talk tad louder so they know we are there. Parker brought a book, but he doesn't read much before he gets antsy. Talking is better. We talk a lot, but not about his heart. We talk about Minecraft and school. We talk about the environment and dogs. We tell silly jokes and get slap happy. It has been two hours now and the highly refined carbs of his lunch added to the hospital lighting is making Parker sleepy. We are moved to another room and told we are next. The ped card has an intern with him today so things are taking a little longer. I really don't mind, I would rather the doctor not rush. These things can not be discussed in five to ten minutes. I am happy to wait for our time and I'm happy for other families to get their questions answered by a doctor who is willing to spend quality time.

Finally, one of my favorite doctors in the world walks in. He is brought to our little college town from Children's Hospital of Illinois in Peoria, IL. I appreciate his willingness to come to us so all the heart families in our area don't have to drive a couple hours to him. Our doctor is so sure and completely competent, but in such a wonderfully accessible way. He is "old school" and able to diagnose many heart issues with his stethoscope (backed up by the latest in technology, but he gets it right before all the expensive pictures). I want to tell the young intern (who I find out is going in family practice not cardiology) that she is so lucky to have even a few hours with this doctor. I want to grab her by the shoulders and shake the yawn out of her. I know she is overworked and has little time to sleep, but seize this time with this doctor...please!

Notice how respectful and sweet he is with my growing boy. My twelve year old with his shirt off and two people listening to his heart, he is a person. A person born with a heart condition. Not someone who has treated their body like crap for years and now has heart "disease". He didn't do this to himself. He didn't make the poor choices and then ask for pills to make things better. This person before you was born (probably due to environmental factors as we destroy this planet we all live on) with two holes in his heart, a tricuspid valve with only two cusps and a leaky aortic valve. Listen to his heart and empathize with what he is feeling. Only a few days from turning twelve, he is getting to the age where his condition is becoming his responsibility and not something his parents can shoulder on their own. Be careful with the words you use. Our wonderful grandfatherly ped card knows all of this and more.

Dr. A talks directly to Parker and carefully explains everything to him. As he writes down notes, he exclaims how much Parker has grown and how incredibly healthy he looks. I start to breathe normally again. I didn't even know I was holding my breath. I heard Dr. A talk to the technician, I know he's thoroughly looked through the ECHO results. The other shoe is not falling today. The probably inevitable valve surgery is not in our near future. Not today. We never know as his body grows how it will affect his heart. Kids at school, even adults, say things about Parker's stature. Taller is always better for boys this age. Dr. A is happy. Parker height and weight are great. He has shorter parents and shorter  grandfathers so being the tallest is probably not in his future, thankfully. We don't want his heart to have to work too hard just to live. He's played soccer, flag football, cycled in races, and is generally a very active kid. He can remain so, hopefully, for his entire life. The doctor is very impressed with how well Parker is doing, how well the surgery was performed almost ten years ago now, and how Social Studies is Parker's favorite subject in school. Dr. A tells us we should come back in two years, growth is a variable that can change things quickly for his heart, best to keep a close eye during these years. I'm happy with two years, it seems like such a long time when the forms have three months, six months, nine months, and one year at the outside. Once Parker is done growing, he'll probably be able to go much longer between visits, but a cardiologist will always be in his life.

The one sad part of the visit is our doctor will probably be retired within two years. Of course, I don't know how old he is, but I'm sure he has put in his time for longer than I've been alive. When Parker was in NICU, I saw some of the long hours ped card put in and I feel for their families. I don't know how they do it, but I'm so glad they do.
When we arrived home, after a short bus ride and a mile walk, I realized how draining the day was for both of us. I offered Parker the day off from school the next day (today) and Thai take-out for dinner. He was happy for both. So, yes, I'm the bad mom who encouraged her son to cut school today (we called in to excuse him), but really I think a mental health day was needed. He read a lot and did some of the homework I assign him as extra to what they do at school, but he also relaxed and I slept for twelve hours straight last night (never happens) so I know it was the right decision for both of us. We did get some time alone to talk about yesterday's appointment. Parker thinks about other first and really didn't want me to worry yesterday, but he was able to articulate his own anxieties today. He asks a few questions about what the intern said and he hugs me close to say how happy he is that he is vegan. He knows he is doing the best he can for his heart and that he's decided to practice yoga more often and meditate. How I miss having my sweet smart eldest son around every day. Every moment with him is a gift.

Everyone needs a day off.


Cheryl Allen Salinas said...

Thank you for sharing your story. It helps to understand that everyone has something tough to deal with. It's all relative, of course, but can feel overwhelming to each of us, when we lose that perspective that we aren't alone with our individual burdens.

Many years of good health ahead to you and yours!

Cadry said...

Parker sounds like a really remarkable boy. I'm relieved that the tests didn't give reason for immediate alarm, and I agree, a mental health day was definitely in order. That kind of dread and stress requires some serious self care for both of you. I hope that the next doctor that works with Parker will be just as compassionate and intuitive as your current doctor.