Been Here One Week with No Sign of Leaving Anytime Soon

We are fully immersed in the up and down ride that is the recovery of the Fontan. We have been back in the hospital for 1 week, the days are blurring into one another, and time is only really important when it comes to giving my Little Owee his meds.

I think it was Monday that his fluid output was 150mls first thing in the morning, and then pretty much dropped off on Monday, Tuesday, and Wednesday. Wednesday night he was miserable he had me up most of the night, and was only really comfortable when he was attached to me. Thursday morning he woke up miserable, and wouldn’t eat. He insisted that he was fine for a few hours, but by the time breakfast came, he was even more miserable. When he wouldn’t eat more than 1 bite of yogurt it was clear that he was not feeling well. He started complaining of pain in his abdomen on his right side. It also seemed like he was draining more fluid than the days before.

He kind of wanted to go to school, but kind of not. He went and was not so happy at school, and as he was coming back to his room, peds cardiology was coming to show me his x-rays that showed that his lungs had tons of fluid around them. And it was not just his right lung, it was his whole chest.

He had been picking at his dressing around his chest tube for the past few days, and pulled the top off it off, so that had to be changed and sealed back up again so it didn’t get infected. When they tried to drain his chest, there was a clot in the line that kept them from pulling the fluid off. I think the clot was moving around enough to mostly plug up the line, but sometimes let some through if he moved in just the right way. They injected some blood thinners into his chest tube to try to loosen up the clot, and put him on NPO, no food, no drink in case they were unable to pull the fluid through the chest tube and they had to take him back to the PICU, put him under and insert a new chest tube.

Owain was not happy that he could not eat, and even more unhappy that he couldn’t drink.

After a few hours, peds cardiology was able to pull the clot out and drain the fluid out of his chest. In the end, he drained 300mls by the time they were done, and he drained about another 50mls throughout the rest of the day.

With the fluid gone, he was even more hungry and ate tons of food, and was ready to head out to walk around the pediatric floor. That also means that he is draining more fluid than we thought, and more than the week before.

We were feeling pretty good about the fact that he was switched from suction on his chest tube to just water seal,  they cut his aldactone from twice a day to once a day and switched from IV lasix to oral lasix earlier this week.

Has been on a low fat diet since we got here due to his fluid being a little chyle. His numbers when they drained the tube last Friday were 34, yesterday when they tested it was up to 107. The cut off for them moving to a No Fat diet is 110, so today they went ahead and put him on a No Fat diet. Now he is back on IV lasix, and on fluid restriction of 1 liter a day, which is a little over 32 ounces, or 4 of his 8 ounce sippie cups.

We still don’t have any idea about whether or not he will have a cath procedure next week to coil off the largest collaterals, and since today is Friday, I am sure that we won’t have any idea until next week. It is all about his fluid output, and if it actually ever slows down enough that we can take the chest tube out. I feel like we just took 2 steps forward earlier in the week, and 10 steps backward yesterday and another 5 today.

Even through all of that, he still insists on going for walks and going to preschool. He is going to be so upset tomorrow when school is closed.

He loves walking the halls to go find the different photos of fun on the walls, looking for the fish tank and seeing the the other kids in the halls. And by walking, I mean running after him with his chest tube drain that catches the fluid. This boy just goes and goes! The other night after a very long walk around the pediatric floor, he insisted on a wagon ride. I guess he needed some down time, but didn’t want to leave the halls, lol. He slept in the wagon for hours!