Home of the Four Trans

There’s too much that has happened in the past two days, yet, as always, never enough time to express it all. What I want to tell you all is that my baby, Justin, is so incredibly strong. His life ended not once, but twice, in two days. On Wednesday, his choking episode which led to his heart to stop lasted for 8 seconds. Thursday night, just as we thought we were out of the woods as the doctors were ready to attribute the choking episodes solely to acid reflux, he choked again. This time, his heart stopped for 30 seconds. That’s half a minute!

Miraculously (and, yes, I note MIRACULOUSLY), at each episode, my son revived himself back to life. There is so much doctors cannot explain–especially how his heart just stops without any sign of desaturation and decrease in respiration rate. Both times he came to life himself without any CPR or oxygen. We simply tilted his head back, cleared his airway, and he seemed to come back on his own.

One doctor tried to associate these episodes to acid reflux alone. But, Loi and I know better. With Justin, there is never any clear cut answer. Our Justin is special, everyone. We can truly say there is no other like him. Nothing about him is textbook–his anatomy, the trials he’s faced after every procedure (i.e.; bleeding debacle immediately following his BT Shunt Procedure, choking episode and arrhythmia a day following his cath procedure).

Let me tell you this. A wise man person will acknowledge:

1. what he does not know

2. that Justin is different…there is no other like him, and no book will tell you how to diagnose or fix him. It will take a little piecing of puzzles, and thinking out of the box.

3. that perfection does not exist, and that there is no perfect answer

We are blessed to be among such wise people at CHOC–nurses, doctors, cardiologists. They all worked diligently with Loi and me to create the best plan possible for Justin’s immediate life.

I am fine right now. But, I cannot tell you the immense stress Loi and I experienced yesterday as we were faced with a critical decision of how to maintain our baby’s life. We watched as his heart rate continue to drop with no apparent reason and decided it was time to get a pacemaker in to keep him safe. I was scared, to say the least. Scared of losing my baby. Both times, I had to stand and watch as Justin’s heart stopped, with him laying lifeless and blue in his crib. All I could do was stand and watch as a swarm of medical people crowded around his bedside, ready to resuscitate him back to life. My baby, was laying there, and I felt so helpless.

There’s too much to say, and I must go…I need to return to my baby who is now intubated and sedated in his crib. I watched tears fall from my baby’s paralyzed baby yesterday. He hurt, but he could not cry, could not move. He saw me, with his eyes, through his puffy lids. He asked me, “Why, Mommy.” He’s but an innocent little child, everyone, and he’s walking the steps of a mighty man. And, somehow, everyone was sympathizing with me. He’s the one who was hurting, the one who could not speak and decide for himself. He is the one who cannot understand, cannot comprehend why, why, all these people were hurting him, and Mommy, the one he trusts so much to protect him from all harm, was not warding them off, but allowing them to inflict such pain on him. I had to pass my child over the doctors for a second catherization procedure in 3 days for a temporary pacemaker to be put in. I lost it as I held his head while the anasteaologist placed a mask over his face while he screamed his face and eyes red. He stared at me the entire time through those squinted, screaming eyes, asking me, “Why, why, Mommy. Help me!” He was scared, but had no choice. I made the decisions for him, I had some control. He had none. Yet, doctors and nurses sympathized with me, apologized to me, felt bad for me. They asked me if there was anything the could do for me. “No, just help my child,” I thought. And, they knew that that is all they can do.

Everyone, the doctors and nurses all tried their best. And, the Lord is watching over my family and baby. He told me, “Do not be afraid.” He gave me a sign that everything was going to be OK…whatever that means.

I must go. Please continue to pray for my baby Justin as he will continue to fight for his life. His second heart surgery is scheduled for Monday. Justin will hopefully be transported from CHOC to CHLA today, when a bed is available.

There will be more tests, more medications, more pain from needles, poking, prodding.

Thank you everyone for your support.

This entry was posted on Saturday, January 12th, 2008 at 1:00 pm and is filed under Uncategorized. 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.