Post Fontan: Day 4

6:35am: I hate chest tubes. Stockton has been in a lot of pain when they strip his tubes. I just broke down last night because it's so hard to watch. I just researched and questioned other mothers about pain management. We tried a small dose of Morphine about 30 minutes before and he did much better. We are going to see what Dr. McKenzie thinks this morning because our nurse agreed that when his tubes were stripped at midnight, he didn't do well. Being a heart Mom is rough. You constantly have to be your child's advocate because you know them best, but yet doctors and nurses are trying their best as well. I just had to put my foot down last night because I didn't feel right about it. I hate watching him hurt and I know any parent can relate to that awful feeling. They also can't get blood out of his lines anymore which means he has to be poked every morning at 4am. We are going to be working on a pain schedule today and making sure we are giving meds at more convenient times. At night they strip his tubes at 12am and 4am but he gets a dose of Tylenol at 12am and 6pm. Morphine is every 4 hours but the dose is a little high. I want him to have it but he also needs to have a bowel movement so it's a little counter productive. We are going to get him walking again today.  I think he did a good job yesterday. We will wait to see what Dr. McKenzie says this morning.

11:30am

We are on 15! Yay! He has a new room and we have sunlight and a view. (It's the little things remember!) Stockton was taken off his oxygen but then put back on 1 Liter because he was only at 89-90 for O2. He is no longer on EKG leads. So right now he is on oxygen, has a pulse ox, an iv still in his right hand and his 2 chest tubes. We hope this new room boosts his spirits.

9:00pm: Stockton is doing much better with pain. We know what times are best to give it to him. He started lasix today which will make him get rid of any extra fluid he is carrying. The chest tubes are still annoying. He has no oxygen currently and his sats are around 91%. This may increase slightly after his body gets use to the new circulation. (I would definitely like it to.) Seth and I are so glad that we get to stay with him in his room. You can't sleep in the CVICU but you can in the step down unit. We need a couple things to happen in the next day or so. We need Stockton to have a bowel movement, we need him to walk more and we need him to eat and drink more. All of these things come gradually but I can't have him lose weight or be constipated. These are all set backs that could keep him here longer. Around 6pm this afternoon his iv wouldn't flush. We called the vascular access team and they used an ultrasound machine to find a good vein. I love this team because they get a good look and they hardly miss. The first time they got it, we were thrilled. They also gave Stockton lidocaine under his first layer of skin so the iv wouldn't hurt as much. We hope this iv flushes for as long as possible. Seth and I are getting settled in this new room. It brings back a lot of memories. Please continue to pray that Stockton heads in the right direction.