Home of the Four Trans

Good things come from good thoughts…and prayers. Please keep them coming.

If you’re going to ask me if Justin is OK, I’ve got to admit, I won’t know what to say. That question is foreign to me; I don’t know what it means to be OK.

We take each day as it comes. Today, I start with a smile on my face, knowing that Justin is making progress. They’ve taken him off the fetanyl already, and slowly weaning him off the breathing ventilator. Blood pressure and lactate levels seem ideal, and his glucose level and blood clotting is good. We’re not out of the liver disfunction woods, yet, but keep praying. During rounds, doctors decided to wean him off of the milrinon and dopamine, so that will leave him dependent on only (only?!? Wow, my mind has really been rewired. I hate medicine!) heparin, lasix, and morphine.

Mind you, this report is given to me by Loi. My mental state cannot handle the hospital and seeing my baby right now. **Sigh** Such a weakling, Loi said to me. I need to snap out of it! I’m stronger than this, he told me. OK…fine! Going to shower after posting. Geez, Loi always knows how to get to me. I always need/want to be the tough gal. No tears here!

The Artificial Pacemaker

It’s in–finally! For 6 days, Justin’s heart had been pacing with help from an external artificial pacemaker connected to leads ran transvenously through his groin to his ventricle. Ideally, it should not have been in for more than 3 days with risk of infection. But, you know how our story goes. Also, because the artificial pacer is only connected to the ventricle, Justin’s heart did not beat along with its intrinsic rhythm, from atria to ventricle, causing his heart to beat a little weaker, which in turned lowered his blood pressure. For days leading up to the surgery, the electrophysiologist, Dr. Barcone (we think he is awesome with all his knowledge), continued to monitor Justin and his rhythm. He adjusted the pacer up and down, seeing if Justin’s heart can beat on it’s own, with his natural pacemaker, hoping to increase his blood pressure. After 2 days, he decided that Justin’s heart was too dependent on the pacer now, and was comfortable beating only with the pacer. The nerves (he has two AV nodes) that sends the signal from the atria to ventricle has pretty much taken a break, gotten lazy, with a machine working for it. He was confident that once he turned off the machine, his heart rate would reach zero, but would eventually turn back on again. “Uh, let’s not try that,” I told him. Ok, well, it would pick up again, but would still be slow. He needed a pacemaker–end of story.

So, sure, the pacemaker is not ideal. But, it keeps him alive, it gives him a chance. The surgeon placed the box below one of his chest tube incisions, toward the midline of his belly. We feel safer now.

Dr. Barcone (can I saw awesome, again?) is quite baffled by Justin’s condition. He understood what was going on, why Justin’s heart would stop, then start again. Typically, when the heart stops, it stops until he is resuscitated. Basically, when the heart stops, he’s gone (”I know!”, I told him with a smile because I knew how special my baby is). But, what he doesn’t understand is how he still made noises, had a cough, and was able to move his feet even when the heart rate monitor read zero for 8 seconds, then 30 seconds. He also does not understand how Justin could be asplenic (no spleen), have 2 AV nodes, and have both weak or not working. Justin does not follow any particular pattern. He was more inclined to believe that Justin was polyspenic (having many pieces of non-functional spleens), with one AV node that was just weak. But, the x-ray showed–asplenic. The EKG showed–two AV nodes. He admitted, as an electrophysiologist, this was interesting. Man, I could hear the excitement in his voice!

Bottom line–he needs a pacemaker. The surgery will be tomorrow, he says. I stopped him, telling him, let’s just get through today. We never know what surprises Justin will throw us. We just need to take it one step at a time, and have a little faith. He nodded.

I’m so proud of my son. He continues to defy the odds. What the? How did we make such a child? I continue to ask myself this everyday. Science can’t explain it. But, deep down, I know, there will never be any explanation. “He’s a heterotaxy baby,” they say, “there is no sense in that.” But, there is sense, we just don’t know it. Have you watched the movie, Signs? Think about it.

Again, I want to thank you all for your prayers. Both electrophysiologists from CHOC and CHLA agree that this has probably been going on, with Justin’s heart stopping then starting again, but we just did not have anything to monitor it. Dr. Barcone does not believe that the catheterization caused any of this (considering that he’s seen some pretty obscene caths done to the heart). He will not attribute Justin’s heart stopping in the hospital following the cath purely to coincidence because Justin did undergo many changes and stresses. But, let’s just say, we all agree that we are lucky or blessed that it did happen the way it did.

So, it’s in, and we feel better for Justin now.

Please continue to pray for our little one. The road to recovery is also a crucial time. Think positive thoughts and send them our way. Do not speak of the past, of what could be, or what should be. Think of today, of now. Please send him comfort and happiness.

Thank you, all.

This entry was posted on Friday, January 18th, 2008 at 10:42 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.