Embracing CHD : Living in Uncertainty

"He looks way more cyanotic now"
"Does he gain weight?"

The cardiological follow-up visit last Wednesday started like this. Dario is having cardiological control every six months since the second open heart surgery back in September 2015. The last cardiological follow-up visit in May 2018, we had a piece of great news: well functioning heart, normal blood oxygenation or saturation, his growth was at a normal pace and so on. This time, it was a complete reverse.

As usual, the cardiological visit or control consists of 2 examinations and Q&A session with the team of pediatric cardiologists. It is the same team that has followed Dario's CHD case since we moved to Italy. The first examination is the ECG or Electrocardiogram (electrocardiography), followed with Echocardiography. ECG or Electrocardiogram (electrocardiography) is a process of recording the electrical activity of the heart over a period of time using electrodes placed on the skin. The second examination is echocardiography in which the heart diagnosed using the medical ultrasound (sonogram), this echo creates images of internal organs that has 99 percent of accuracy.

Dario was behaving so well during the examinations, a bit frightened though but he didn't cry as dramatic as usual. During the Echocardiography, the team was having difficulty to find the conduit patch from the 2015's second open heart surgery: Unifocalization. They kept searching and searching like 25 minutes while we were waiting with so much anticipation. Dario was staring at the screen too as if he understood that he was being examined for a good reason.

Consequently, the team said that now his heart is deteriorating, due to his stenosis, hypoplastic arteries and way-too-small conduit. His blood oxygenation (Spo2) is lower than the respective year even though through fingertip pulse oximeter it could reach like 83 percent (maximum).

"Looking from his heart condition now, 83 percent of Spo2 seems a bit impossible"
"You know fingertip pulse oximeter can't be really trusted 100 percent, because kids are moving and it's not precisely attached to the fingers" cardiologist stated

One cardiologist took a handheld oximeter and put it on Dario. My heart abruptly dropped because it was clear to see that his Spo2 was only around 63-68. I stared at my husband, wanting his reaction but he was too busy holding Dario's hands.

"Dario should be having medical interventions soon"
"You will be contacted shortly, presumably before Spring!"

I was overwhelmed with anxiety while tons of questions wandered inside my mind.
"So, what do you mean? Is he going to be okay? isn't it too low (Spo2) for him?
" Will he have tet spell or convulsion?" "How can he manage to do activities like therapies and school?" I asked agitatedly.

"First of all, you need to be calm mam, Dario needs a medical intervention soon but he is going to be okay as long as you keep him calm and not pushing him to do many activities. The most probable intervention he should have is angioplasty because his conduit and arteries start to pump less of clean blood as they ought to. We need to enlarge them so that Dario's Spo2 will increase and it would definitely help him grow. Anyway, if this didn't work, we should think of other options, like changing conduit and enlarge the arteries through open heart surgery. We would let you know soon, we need to discuss this to the team." one cardiologist tried to assure

That's it, I was flabbergasted. How could his heart's condition be deteriorating way so fast? I wasn't able to think straight in front of the doctors because they asked me to stay calm knowing from the past that I was indeed a fainthearted mom. I said I was okay but deep down I was thinking how could this possibly happen? Did I miss the signs? Dario stuck in the same body weight since last year but I thought it was because he was currently so active. I was blank for a moment.

I never had such a good sleep since, I kept thinking of what I was missing and now I think I know what the culprit is: Infection. Those damn infections that he got from the pre-school back in September. He got like 3 times of infections which led to Bronchiolitis. There were times like doctors didn't let us go home though the fever had gone away and the cough disappeared, simply because his Spo2 plummetted. But until we discharged, they said that they had no idea and asked us to contact the cardiologists. Soon after, the Spo2 came back to 83 percent maximum and we thought "okay, the storm has passed"

This whole situation makes me sick, I feel like such a failure. Everytime somebody asked me about Dario like "How is Dario?" I bursted into tears, I couldn't contain myself.

Anyway, I have to remind myself again that having a child with a CHD is like holding a bomb, you have to hold him extra carefully and you should not whatsoever miss any signs but since Dario happened to have a rare syndrome as well, I sometimes couldn't figure out which one is which and professionals can't really help either. In some occasions, Dario's immunologist (22q experts as well) blamed the cardiac condition but when we confronted to the cardiologists, they said it should be from the 22q.

We are living in uncertainty, when you have no clue as to where this could take you: for the better or for the worse. You can't fathom the future so you just have to live in the present without thinking too much. CHD taught me to cherish every moment..

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