The Fontan

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We arrived at Children’s Memorial Hospital about 6:30 this morning in preparation for his last, hopefully, surgery for a while – the Fontan. The Fontan is the final stage of the 3-Stage process of restructuring his heart.

To help you understand this procedure, I found that Cleveland Children’s Hospital gave the best explanation of the procedure they state that, “The Fontan procedure involves connecting the major blood vessel that returns blood from the lower part of the body (inferior vena cava) to the pulmonary artery using a large synthetic tube. After this operation, blood will flow to the lungs from both the upper and lower body. The blood that the heart is able to pump throughout the body is now fully oxygenated.”

The reason why they perform this procedure when children with HLHS are between the ages of 2 and 4 is because, “by this time, their lungs have matured enough to handle blood returning from both the upper and lower halves of the body.”

This will be the 5th surgery in this 3 year old’s life. He’s a strong boy, of course he is, he’s Allah’s child. He’s definitely a fighter. He’s an excellent example of nothing happens except it be by Allah’s permission.

His surgery was a success.

As with all surgeries, there are risks. Although, Qadar’s overall procedure was successful when his right chest tube was inserted, a duct was nicked; this caused a build up of excess fluid to accumulate between [pleural] layers, fluid-filled space that surrounds the lungs. This is called pleural effusions. Excessive amounts of this fluid can cause chest pains and breathing problems if gone untreated treated. Chest tubes are again re-inserted to help drain the excess and unfortunately, in order for the duct to heal he had to go on a fat free diet. If excessive amounts of fat is ingested pleural effusions turn into chylous effusions.

Have you tried stripping a 3 year old of foods they love to eat? It is hard trust me. Qadar’s diet went from eating whatever he loved – yes, he actually used to love eating, to having foods consisting of plain oatmeal, potatoes, cream of wheat, and English muffins with salsa and “fat-free” cheese (my so-called take on non-fat pizza) for months on end. Can you imagine his frustration? Mine?

Oh by the way, each time he was re-admitted, they stopped his food intake. Why would they stop a 3 year old from eating, you’re wondering. When you go under anesthesia and during surgery, it is possible that, the contents in your stomach can regurgitate (pass) into your esophagus and mouth. That content can then pass into your breathing tube and cause aspiration pneumonia. Aspiration pneumonia can be life threatening.

I remember on his 3rd re-admission, after Qadar’s chest tube re-insertion, his surgeon and nurse was at his bedside and Qadar was eating some “Fat-free” Sour Cream and Onion Pringles watching Cars. The surgeon was just watching him eat while explaining to me that his pleural effusions have turned into chylous effusions. I was confused, shocked, and disappointed because he was not healing. How could that be? I was diligent on feeding him a fat-free diet.

While watching, Qadar, he goes on to say that, according to government regulations foods have to contain a certain amount of fat to be classified as fat. He says, just because a label says, “Fat-free” does contain small amounts of fat. I turned, to Qadar’s can and said, “Well I’ll be damned.”

Later that same day, his “fat-free” dinner came he had, chicken breast, mashed potatoes, and I think broccoli. I happened to glance at the nutrition contents and noticed that his meal contained fat. I called down to their room service shared with her my findings, she saw the fat contents, placed me on hold, I let his nurse know, she called the doctor.

A fat-free diet is harder than it sounds because, everything has fat in it! If a label says, fat-free, guess what; it still has fat in it. To make a long story short, Qadar’s diet was changed from “fat-free” to low fat. That was an agonizing relief.

 

Getting Chest Tubes Removed

Qadar getting his Chest Tubes Removed