Home of the Four Trans

It’s taken me a few days to update on our cardiology appointment because I’ve needed a little while to reflect.

We’ll start with the GOOD news. Justin’s leaky AV canal shows less regurgitation than a year ago, post bi-directional Glenn. His cardiologist labels it as mild to moderate (remember, this is subjective to the observer. The point is it has improved from moderate-severe.) His oxygen, or saturation levels, were at 85-90 percent. Although normal kids run at 100 percent, this is high for Justin. His blood pressure was low, with the systolic at 69, and 73, depending on the left or right leg. But, the mean was normal. The cardiologist was not concerned about this because the leg does not always give accurate readings. And, I assume his lack of worry is also due to  everything else looking decent. The medications that he is required to take for his heart, Lasix and Captopril, are at the same dosage. He will also continue on baby aspirin and amoxicillin. The other highlight of the day was to see Justin measure in at over 30 inches. 6 months ago, he was at about 27 inches.

Now, the BAD news. Justin is not gaining weight particularly well. He measured in at 3oz less than he did 6 months ago. He is completely off the charts, and even off his own curve. I also noted that Justin lost about 1.5-2 pounds due to his recent illness. That is A LOT of weight for someone so small. Cardiologist suggested we meet with GI clinic to see if he could get a milk drip at night to increase his caloric intake. Justin needs to be at about 13 kilogram, or 28.6 pounds, to be eligible for the next open heart surgery, the Fontan. He officially weighs at a mere 17 pounds, 3 oz. Unsure of when the Fontan is normally performed, I asked the cardiologist at what age. The answer: 3-4 years. I was actually surprised to hear this, as I thought it was more like 2-3 years of age, based on the post-Fontan blogs that I follow. This gives us a little more time to help Justin gain weight (well, hypothetically, anyway.).

OK, are you ready for the UGLY? I call this the UGLY segment because it just is on many levels. The discussion that I am about to discuss with you left me quite blue for 2 days, and I had to ask myself if how I was feeling was how depression feels like. I’ve never gotten to this point. And, I was quite disappointed in myself. I’m OK, now, but I really had to pull myself out of it to function for my kids.

Ever since Justin’s last cath/pacemaker/surgery/stroke ordeal, I’ve been left quesy with this neverending question of why. Notsomuch as in, Why did this happen to me or my child? But, more like, Why did the series of events occur as they did. The cardiologist’s answer is we will never know why. The important thing is that he is safe, now, with the pacemaker, and we’re doing the best we can through therapy to help him regain his abilities damaged by the stroke. What happened to Justin was very unusual, something that no one could have prepared me for. Cardiologist said that children with heart anomalies like Justin’s are expected to have complications that may lead to a pacemaker dependency or stroke–sometime down the years of their lives. But, never could he have predicted that Justin would be devasted by both before the age of 2 (but, really, it was 1 year old. Justin was only 5 months old). As a cardiologist, he’s seen a lot, and for him, Justin is unusual.

I’ve come to accept the IS  in our life, in Justin’s life. I do not retrace my steps to the past because I cannot let go of what has happened. I have dealt with it. I see the smile on Justin’s face, and I think, “He’s happy. That’s all I ever wanted for my child. And, that’s all that matters.” I take Justin to therapy 3 times a week, and meet with his infant stimulation teacher once a week. This is all normal to me. At the same time, I am thankful that Justin should have such opportunity. May I remind you that Justin is 19 months old, and cannot crawl like a typical 8 month old child can. He is just learning to stand on his own. He cannot walk. Normal 19 month old children run. Yet, I do not compare because I see the progress, though slow and slight, that Justin is making. I am proud of my child, and thankful for each day that he wakes and smiles at me.

I retrace my steps to the past because I am afraid of the future. There is this haunting thought in my mind, every day, that wonders if that last cath/pacemaker/surgery/stroke ordeal is a sign of something going on in his body that has not yet been rectified, that could lead to…I will not say it.

Towards the end of our cardiology appointment, I asked the cardiologist for literature on heterotaxy. Apparently, the literature would be too technical for me to understand. I asked him if there were any studies done about heterotaxy. He said yes, but mostly on the genetics aspect of it. I asked him if there was anything, anything else at all that I should know about Justin and heterotaxy. Tests that could be done. The questions started getting more general because I started getting desperate, hoping I’d get an answer somewhere. Finally, I asked a more specific question about his lungs, and whether or not he knows if they’re abnormal (as many of children with heterotaxy are). Could doctors tell through a chest x-ray? Cardiologist told me he hasn’t looked at that, yet, but he wouldn’t be surprised if there is abnormality in the formation of his lungs.

What does this mean, I ask? How does this affect how healthy he is? My readings and research have helped me understand, if nothing else, that heterotaxy is very complex, involving many or all systems of the body–cardiovascular, pulmonary, immune, digestive. And, he finally answered with something that I was trying to get at: all the systems work in synergy. “Exactly!”, I thought. So, how could we isolate only the heart as a malady, and not consider how every other system that is poorly formed in his body affects his heart, and the other way around. Shouldn’t other specialists work with the cardiologists in understanding these heterotaxy cases?

By this point in the conversation, I was ready to stop because I realized the enormity of the task I was about to ask of him. But, I didn’t. I asked him to help me. I asked him to share with me any information that he may get from knowing Justin’s condition and through his literature and observation of other heterotaxy children. To help me prepare or predict what may happen the next time around.

I realized how almost an impossible of a task it is. It may take beyond our lifetimes to know….why and how the body works in this synergy. The human body is complex. Basic elementary biology taught me that.

I was just so…afraid…of the future. I always want to be in control. And, suddenly, I realized that I’m not. Even, now, as I type, this thought brings tears to my eyes.

When I accepted this child as God has given him to me, I had accepted the great uncertainties, pain, and heartache that would follow.

In the two days after the meeting, I felt entirely hopeless. Hopeless of the future. I realized that it was the worst place to be, thinking like that. But, I was sad of the imminent truth.

What pulled me out of this rut? I cannot tell you that moment of epiphany. What I can tell you is that the more time I spend with my children, the more I learn of patience and graciousness. Each day is its own miracle, and I should not be so greedy as to ask for so much more.

Justin is the future. He lives a life that many could not have imagined until 30 years ago.

I continue to be thankful for each day, and take it as it comes. I cannot live being afraid of what could be, when what I have is a living miracle.

P.S–This does not mean that I will stop asking questions, and learning more about heterotaxy and Justin’s condition. I hate to say this, but it means I will expect less from his doctors. I think my expectations were set too high. Anyway, life is more worthwhile when you are appreciating rather than worrying.

This entry was posted on Friday, March 6th, 2009 at 3:28 am and is filed under Baby Book, Uncategorized, Videos. 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.