Update on Kyson plus video

The last two days have been really good days for Kyson. He is well loved around this PICU even though he is super onery a lot:) He tells almost everyone who gets near him..."don't talk to me!" Despite this, I know of several nurses who say Kyson is their favorite patient:) If you can get him to forget for just a second that he is in the hospital his little personality shines through and I love it!!! Here's a little video of one of those special moments. The volunteer's name is Nancy and she comes by almost daily to try and cheer Kyson up. Some days he wants nothing to do with her but as you can see he will warm up to you once he knows he can trust you won't give him big owies.



What's the plan for Kyson now? Well, for those who don't know, Kyson had another heart catheterization on Tuesday to do a fenestration between his Fontan conduit and his atrium (confusing I know but just think of it as another way for the blood to escape the top chamber of the heart to relieve some of the pressure it is working against). We were all very excited when we heard it was successful, hoping it would slow down his drainage significantly. Well, Wednesday morning they did an echocardiogram to see how the fenestration was doing. They were so disappointed to find that there was no longer any blood flow across it, thus it had probably already clotted off. I guess that fenestration was not meant to be!

Now that the fenestration was unsuccessful the only other option left is to do a thoracic duct ligation. I've tried finding information about it online and haven't been too successful. Pretty much they go in and seal off his thoracic duct (where the drainage mostly comes from) to prevent it from leaking into his chest cavity. While in there they would also coat his lungs to seal them off as well. This is more than likely something they will have to "unzip" his chest again for...so sad! They will give him the weekend to see how he drains and if there is no progress next week he will go back to the OR. I'm praying for a miracle but if it's the Lord's will that he goes back for surgery then I will accept that and be here for Kyson. I do have complete faith and trust in the Lord and I know he has been with us every step of the way. Sometimes it is hard to understand why certain things happen a certain way, but I know the Lord is in complete control. We will get through this and hopefully emerge better people in the end.