Medical Review

Overall, I think everyone is happy with how Tyler is doing.

Cardiac wise, he is going in and out of junction and sinus rhythm which is normal for a post Fontan and should correct itself.  He wants to be in sinus rhythm which helps his heart function and sats.  When he goes into Junction rhythm, his sats drop to the high 60's low 70's which isn't great and he gets tachycardia.  They have been trying to control when he gets paced but it often competes with his normal heart rhythm.  None of this is a major concern.  Just a lot of tweaking and tying to figure out why he is desatting.

His effusion seems bad and then he dumps a lot of fluid.  They have increased his diuretics to a moderate level and could continue to increase if and when needed to get rid of fluid.  His left side has been clear, which is great because he doesn't have a tube on his left.  His right side has been the concern.  They get x-rays to determine if a pigtail chest tube is needed, but so far so good. Yeah!! Hopefully Tyler will be able to get up a little today and that should help with his effusion.

He doesn't have great access right now.  His IV's fail very easily.  The IV nurse said his veins are very superficial and wants to ultrasound to find a deeper vein. His art line failed, so his only central line is his femoral line, which is at high risk for infection, so ideally they would like to pull it and have a pic-line.  The IV nurse hasn't been here over the weekend and while doctors can place pic lines and art lines, the IV is so fast and efficient which would be great. So Tyler will probably go NPO again late tonight so they can get that placed.  The attending gave him some good doses of morphine last night to place an art line, but he has this weird scarring from a past pic-line that was preventing it from being threaded, so we stopped and are trying to wait.  

The morphine actually was a really good break for Tyler.  He slept for a long time and woke up refreshed and wanting to eat.  It was the first time he actually wanted to eat and watch a movie.  We watched spongebob and scooby doo and were down for bed around 8:30.  Soo nice!!  Tyler had a good night.  He only woke up when we needed to mess with him for one thing or another.  We tried to move him a couple of times for him to drain fluid and it seemed to work.

He has been fighting a low-grade fever.  They placed him on Tylenol every four hour, got some fans going, added two precautionary antibiotics in case of infection and sent off a culture that should come back in 48 hours to determine if he has an infection.  So far that has done the job.  Taking out the femoral line will decrease chances of infection which should be good.

He started doing this weird breathing thing last night.  He would say it was hard to breathe.  It is hard to tell if it is because of his effusion, his chest hurting or feeling different from how his heart is now set up.

Sooo that's the medical update in a nutshell.  He is stable.  We recognize that to be a miracle in itself especially after the slight emergency in the OR.  We are so grateful for the wonderful nurses and doctors!

Emotionally, Tyler is doing much better than I thought.  He is pretty calm.  He was so cute on the phone yesterday talking to Scott.  His voice is still very faint and yet he told his brother happy birthday and he loved him.  He is doing a great job communicating his needs.  Danny gave him a blessing that he would be able to communicate his needs, even if its just for a drink and let me tell you, that has been his biggest request. It is hard to be on a a high dose diuretic and have fluid restrictions or NPO.   He is usually understanding and cooperative but every once in a while will tell a nurse something like, "You are mean," or "I am not giving you a trophy."    

That's all for now!