Facing Goliath : Post-Op Day 3

Jack had a rather uneventful night last night. He was up the first half of the night with some pain but then got some pain meds around 1:30am and slept hard for the rest of the night. When he woke up this morning we got him up to pee pee. We made him walk all the way to the potty for the 2nd time and he screamed the entire way there and back. The chest tubes are causing him a lot of pain and more than anything, moving scares him. He knows moving hurts so he would rather stay in his bed and stay still where it doesn’t hurt. BUT he did it and was so brave.

The doctor came by not long after that and told us that Jack’s fluid drainage is not looking great. Its a deep yellow color and the normal flow of the fluid would be lots of red then as it slows down a little yellow until it stops. Jack had lots of red and now is having even more yellow and it is nowhere near slowing down or stopping. This is leading them to believe that Jack is experiencing something called chylothorax pleural effusions.It results from lymph formed in the digestive system called chyle accumulating in the pleural cavity. The explanation is that during the surgery a part of the lymph system was nicked and some of that lymph fluid is leaking out now. The result is that the drainage will continue and be more persistent than just normal fluid drainage from the Fontan. Dr. Dabal told us before surgery that the drainage was going to be the main issue to deal with after surgery so none of this is crazy unexpected. They can’t tell just yet for certain that Jack is experiencing chylothorax because he hadn’t eaten a bite of anything up until this morning. Once he starts eating the fat from his food intake will turn the fluid that is draining a milky white color. Then they will know for sure that this is what Jack is experiencing. However, with how little he is eating and drinking, it could take up until tomorrow or longer for that to happen. Right now we’re just treating it like normal and waiting to see what happens. Either way his fluid output has not slowed down so it doesn’t look like we’ll be losing either chest tube for a good little while which means we’re kind of just stuck waiting.

Jack is also experiencing a few other minor issues. His doctor said that his albumin, NaCl, and IGG levels are all too low and if they continue to let them fall we will get into a dangerous zone that we want to avoid so they’re treating him for each of those three issues today as well. Albumin is a protein that is found in the blood. With his levels of albumin dropping it causes the osmosis of the fluid in Jack’s blood to happen easier which would mean more fluid which is what we’re trying to avoid. (Hey medical friends, I could be totally jacking this up-no pun intended- but I’m doing the best I can so hang in there with me and feel free to correct your heart out in the comments!) His NaCl level is basically his sodium intake. Since he’s not eating he doesn’t have enough salt floating around in him. They can’t push it in his IV so we’re trying to get him to eat some super salty foods. Popcorn and french fries are healthy foods of choice today. Lastly his IgG levels are low and he is having to have that supplemented also.Immunoglobulin G is an antibody found in the blood. Basically, another thing he needs that his body is not producing super well right now. They gave him some benadryl just in case he was to have a bad reaction to it and then after it had time to kick in good and strong they came back to push the IgG. The infusion started super slow and after about an hour Jack woke up needing to pee pee. When we got him uncovered to use the bathroom he started shaking really bad. His face was super red and flushed looking and his teeth were chattering. We called for the nurse immediately and she called the NP who told her to stop the infusion immediately and give Jack steroids, more benadryl, and Ibuprofen. We covered him up really good and I loved on him until the shaking stopped. It didn’t take long for his normal color to come back and the shaking to go away. However, a few minutes later Jack started kicking his legs violently and screaming hysterically. He was thrashing around in his bed and grabbing at all of his cords and tubes. It was scary. The nurse said she thought he was having a bad reaction to the steroid. So we got him up and got him to stand up next to the bed. He continued to yell and kick his feet. The nurse pushed morphine to calm him down and after a few minutes we set him back in his bed and covered him up and he fell back asleep. It was a very scary and overwhelming hour to say the least.

The NP came back in to talk to us about what had happened. He said around 10% of their patients that have to have the IgG end up having a bad reaction to it so its not super uncommon. They won’t try again for several days and depending on whether or not his fluid drainage slows down, he may not need it again. The IgG is just basically a replacement of the red blood cells that he needs to fight off infections. With the massive amount of fluid he has been draining, he has lost a lot of those red blood cells and therefore has a compromised immune system. If the drainage stops then his immune system will build itself back up and all will be good. If not, then they’ll need to try again with the infusion in a few days. He said if we have to try again they’ll try another name brand, sometimes that makes a difference. In the meantime we need to be even more careful than normal to make sure no one brings any germs or sickness into our room. So we’ve decided to stop all visitations for the next few days until we can tell if he’s going to get past all of this on his own or if we’re going to have to keep going with the interventions.

Needless to say, after a dose of morphine and a dose of benadryl at the same time, our boy passed out cold and has been completely out of it since. He’s slept like a rock all afternoon. Next time he wakes up we’re going to try to get him out of the bed again one more time for the night because the more he moves around the better the fluid drains.

Jack’s right upper lobe of his lung is not looking too hot on his x-ray today so his sats dropped to the upper 80’s and they ordered some chest PT for 4:00. But since he was in the middle of a crazy episode at 4:00 they skipped it and just came in for the first time to do it tonight. All of the lying around and sleeping is good for some healing things but bad for others. He needs to be up, moving around, coughing and talking in order to clear some of the junk from his lungs and throat. Hopefully tomorrow will be a better day and we can see him up and about a little bit more. As far as the chest PT, he didn’t like it to say the least.

Each day is progress. Even if it feels like one step forward and two steps back, its still one step forward so we’ll take it. The VERY positive is that all of the issues we have today are fixable and not life-threatening. The negative is that we have to fix these issues to make sure that our boy gets healthy and well enough to go home. It could take a few days. It could take a few weeks. In the meantime we’re all missing our H like crazy. He came today and spent a few hours with us. Jack had been missing him so bad this morning when he was awake and alert but by the time he got here Jack was already out of it and couldn’t enjoy him being here. We’ll try again in a few days. Mommy and Daddy’s hearts are torn to have our two sweet boys in two different places. But we are exceptionally blessed to have amazing parents taking great care of our sweet baby while we stay here with Jack who needs our full and undivided attention right now. I keep telling myself that this is only temporary. It will pass and my sweet family of 4 will all be back under one roof, OUR roof, soon. God’s got this.