Fontan Surgery Day 3: The Good and the Bad

Shane spent the night up with Asher last night, and he had a relatively good night, or at least as much as can be expected when you have to be woken up to take medicine and have your vital signs checked and your pleural caths emptied. He woke up this morning and wanted to walk himself to the bathroom, so that was a good sign.

By the time I came up, he had eaten a tiny bit of breakfast, and he was feeling pretty good. We read a few books, and then he watched some shows while we met with the nutritionist. She went over Asher’s nutrition plan for the next six weeks, which is basically a high protein/low-fat diet. The toughest part is that he is supposed to have 15g or less of fat per day, so we will really have to watch what he eats, avoiding things like cheese, treats and pastries, buttery dishes, etc.  Just after that, someone from child life came by for music therapy.  She gave Asher some drums to play, and she sang some songs like “The Wheels on the Bus” and “Old Mcdonald” while he played along on his drums.  He loved it!

 

They wheeled a Wii-U into his room, and he was excited to race Shane in some rounds of Mario Kart. He ate some lunch (just a few bits of chicken and a few bites of yogurt), and by then he was pretty worn out. He took a nice nap and was able to get some rest.

 

When he woke up though, he was not happy. He couldn’t get comfortable, and didn’t want to try and do anything that might distract him. He also had to go to the bathroom but didn’t want to. The nurse came in and we got him to the bathroom, but then she had to empty his pleural caths and he was already a bit worked up. When he was done, she gave him some oxycodone, but by this point, he was done and didn’t want to take it. I talked him into drinking some, but then he tried to spit some out, started coughing, and then threw up all over everything – his bed, his dressings, his IV, and even in the cords from his central line. It was a mess. She got him all cleaned up and pulled out his IV, feeling it was too hard to clean out the throw up without leaving chance for infection. A couple of hours later, once his cardiologist approved it, they took out the central line. Maybe that was his plan all along! He thought if he threw up on everything maybe they would take some of the stuff out of him.

 

After all of this, he was worn out, and he fell back asleep for awhile. He woke up just as my mom brought the kids up to visit him. I think it was just what he needed! He was happy to see them, and wanted each of the boys to take turns racing him in Mario Kart. He chatted happily with them, and we saw some smiles again on his face.

     

After they left, he felt brave enough to move to the wagon and go out for a ride. We took him to the play room, and he played with the trains and a few other toys. He then wanted to go see the garden, an outdoor patio area on the third floor. We took him down there, and he wanted to get out and sit on Shane’s lap for a bit. It felt nice out there in the evening, a perfect spring evening. He came back in and ate some spaghetti for dinner, and since then has been happily playing Wii with me or with Shane.

           

I sure wish I could take away this pain from Asher, that I could take his place through all of this. It is no fun to watch him have to go through all of this and to see him scared or in pain. I can distinctly remember hearing Sister Carole M. Stephens talk at the Women’s session of conference in October talking about the Master Healer. She tells a story about a young woman named Josie who suffers from bipolar disorder. One day, when she was having one of her days of deepest darkness, when she was at the worst of her mental anguish, her mother sat over her and whispered over and over, “I would do anything to take this from you.” I know just how that mom felt! However, Josie, in the moment when she was convinced she couldn’t take anymore, she says, “A transcendent and wonderful power suddenly overtook my body. Then, with a ‘strength beyond my own,’¹⁴ I declared to my mom with great conviction seven life-changing words in response to her repeated desire to bear my pain. I said, ‘You don’t have to; Someone already has.’” I know that Jesus Christ can not only comfort and sustain me through this, but that he comforts and sustains Asher as well, and I hope that through this trial throughout his life, he will be blessed to understand the power of the Savior’s atonement for him personally. We sure love this boy and are constantly amazed and overwhelmed at his courage and strength through it all.