Home of the Four Trans

So, of course, the surgery has been delayed. My dear Justin loves throwing us those curveballs. There is apparent stomach distension due to gas in his intestines. For the sake of his safety, Dr. Starnes decided to wait a few days for it to pass before going forth with the Glenn.

Quick Recap of Past Week’s Events
1/8: heart catheterization performed with scheduled overnight stay. Cath. results were favorable.

1/9: hospital prepared to discharge us, but were delayed because echo technician was running behind. Finally, she arrived as did the cardiologist who performed the cath. In a blink, he recognized Justin’s heart rhythm was off. He called for a blood draw to check for electrolytes.Results came back normal.

Justin’s heart continued to go in and out of rhythm for several hours as EKG tests were performed. By 5 pm his heart stopped for 8 seconds while sitting in his carseat. Main cardiologist attributed to acid reflux. Debates of how to handle the situation– with Zantac or pacemaker–ensued. With hesitation, we decided to give Zantac a try. Took Justin off feeds. Evening progressed smoothly without any episodes of arrhythmia.

1/10: Justin put back on feeds to see how his body would react. Dysrhythmias returned, but patterns were of greater concern to the doctors because he appeared to have heart block (arterial block). But, at the end of the day, he was still diagnosed with only acid reflux. I was almost ready to believe it because I desperately did not want to believe that anything was wrong. But, I knew. Something wasn’t right. At 1:30am he stopped breathing again. Took him off feeds.

1/11: Main cardiologist still refused to acknowledge that Justin’s heart may be of issue. Blamed everything on acid reflux. Justin continued to starve as we waited for a GI doc to arrive to perform a diagnostic of the Ph levels in Justin’s esophagus to confirm or deny acid reflux. Doctors and nurses discussed getting him trasnsferred to CHLA so that they can decide what is best for him.

Unexpectedly, his heart rate dropped dangerously low again, although he had had nothing to eat for 9 hours. I made a clear choice to have a pacemaker put in.
But, with Justin due for his Glenn, nurses and doctors thought it was best to transfer him with a temporary pacemaker with an external lead and have the permanant one put in the same time as the Glenn. Heartbreak and tears ensued as I gave up my baby to strangers a second time in three days. Justin was intubated and sedated in preparation for transport.

1/12: waited for CHLA to open up a bed. Didn’t happen. Justin was relatively stable.

1/13: Justin’s heart was overriding pacemaker. Adjustments to machine were made. Continued to wait with promise of tomorrow pick up.

1/14: CHLA arrived at 5:15a to CHOC. Returned to LA by 7:30am. Justin appeared to have stomach distension, so the waiting game begins.

How We’re Coping

With Justin’s condition, there is no perfect answer. I’ve been told more than once that this is just a great balancing act. Nothing we do is ideal for him. We’re never in an ideal situation–ever.

Although he has the temporary pacemaker in now, which allows him to be relatively “safe”, there are risks to having it in for a duration longer than 3 days. So, all we can do is sit tight and pray, as we wait for his body to release some of the gas.

I finally got some rest at the Ronald McDonald House last night after being up for over 30 hours. Loi thinks it had been over 48 hours. But, we’re so overwhelmed, sometimes we can’t think straight. I forced myself to leave Justin’s bedside, and agreed that we both should get some rest. Because, what good are we too him if we get sick.

This is funny to say, but sometimes, I think my love for Justin is like teenage lust love. It’s the type of love where you’re so overwhelmed by deep passion for a person that you can’t eat, can’t sleep. My stomach is always turning. Sometimes, I get butterflies just looking at him and thinking of our future together. When I tell him I love him, it makes me tingle.

I see all these CHD babies making it through their surgeries, and going forth with their lives. I want to look to the future with great hope that that will be Justin one day. But, the one thing Justin has taught me that I can never ever deny, ever again, is to take it one day at a time. Even as he lays still and sedated with a breathing tube down his throat, I embrace that I still have him, at that moment. I talk to him, hold his hand. They prick him, yet, he does not move, because he is so sedated. But, I do not forget that he can feel pain. I tell him what a strong boy he is, and how proud I am of him. His eyes are closed. His body is still. But, I know he can hear me.

Thank you, again, everyone for your support. It means so much to us.

Now, we are headed back to the hospital for another day. Pray for us.

P.S.–Do you believe in miracles? I asked the attending physician yesterday this as St. Cabrini’s relic mysteriously disappeared from Justin’s crib. I could either believe that someone stole it, or that she is out performing a miracle for my baby. We searched every trash can, turned over every blanket, scoured the entire floor–nothing. What do you choose to believe?

This entry was posted on Tuesday, January 15th, 2008 at 9:07 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.