Home of the Four Trans

This past week, I worked on typing up a consolidated form of Justin’s medical history in his (almost) 8 months of life on this earth starting from the day he was born up to his latest cardiology appointment. I had the opportunity to steal 1.5 hours while Justin was napping (Nathan was with his Auntie at work), in which time I was able to finish only up to his follow up with cardiology after his LADDS procedure–that was done in his second month of life.

As I typed up the dates and the events following those, I could not believe how much had happened in such a short amount of time. I did not realize that Justin had been in the hospital for only 22 days after that first surgery–at the time, it seemed like forever. Each day dragged on and on and on like there was no end. Every subsequent day only felt like a continuation of the previous day. The sun would rise and fall, the nurses would change at each shift, and doctors and surgeons would make their bi-daily rounds. The world went on inside and outside of the hospital–people went home, ate, slept, worked, played.

But, for people like us who had children in the ICU, life did not go on…it stood still…until our children were out of the hospital. We did not know how to be normal, to breathe, to eat, to sleep, to think of tomorrow. We could not see beyond our very own child laying in that hospital bed. Nothing else seemed to matter, but him getting through that day and the day that he’d be discharged.

I remember an attending physician at CHLA telling us to go “get some rest” because Justin was stable and that there was a team of doctors there trained to care for him. He said he knew that this was easier to say for a person who did not have a child in the ICU, but assured us that we’d be doing everyone some good if we just went to get some rest. Another attending at CHOC offered the information that parents who spent prolonged time in the ICU had symptoms similar to those who suffered from post-traumatic war syndrome. “So, what are you trying to say?,” I asked. “You should get some rest,” she said. It was important to these doctors that our minds were fresh and our bodies were well rested to make crucial decisions for our child.

But, you see, when our child’s life was hanging by a thread, when every inch of his being depended on this already weakend organ, his heart, blinking almost didn’t even seem like an option. I mean, Justin’s heart literally stopped within a blink of an eye, without prior signs. So, to relax a little, or to sleep, even, was certainly out of the question. This was our mentality every moment we were in the hospital.

When we were on the road home to visit Nathan or when Loi would stop into work to see how everything was going, hospital mode followed us. Life around us continued, but this feeling of dread and end lurked within us.

We’re back to “normal” mode, and a month goes by terribly fast, now. I cannot believe that 2 months have already gone by since we’ve been discharged from CHLA. This is not to say we are not without glitches (like the fact that he chokes while he eats sometimes and arches in pain and threw up a couple of times. Oh, and I took him to the pediatrician the other day because his lips were bluer than usual), but we are certainly not in heightened combat mode all of the time.

Hospital mode is behind us and I do not wish to enter it again for as long as I can help it. But, living in the hospital is a reality, still, to others. Sick children continue to exist.

Just earlier today, a little 13 month old boy, Elijah Daniel, from a heart blog that I follow was unexpectedly admitted to the hospital for his extremely low oxygen saturation levels and cold/flu. His surgery not scheduled for another 2 weeks. But, it seems as though it may be bumped up to this week. I ask that as you pray for us to also pray for this little boy.

And, here’s an exercise for you all: Just as you’re ready to complain about the wrongs in your life (how you do not have enough money, wealth, recognition, achievements, time..things), take a moment to breathe and appreciate. Appreciate your freedom, your health, your company, your being. Then, all else will not seem to matter. For, it would be a terrible waste to realize how good you really had it only when you’ve already lost it.

This entry was posted on Sunday, April 6th, 2008 at 12:58 am and is filed under Heart Disease, Justin. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.