Four weeks and counting...

I really should be better about updating my blog...facebook is just too easy! I have so many pictures I need to upload. I just read my last post and decided I should do a quick update here. Kyson has done really well the last few days. His chest tube drainage has slowed down considerably and they have allowed him to start eating and drinking again. He is on a 10 fat gram diet so there aren't too many options that he really likes so it's been a bit of a struggle to get him to eat. We are getting there though!

The greatest blessing about all of this is he more than likely (unless he surprisingly starts draining a lot more again) will NOT have to go back for surgery again. I am SOOOOOOO grateful for that! He has been so much happier lately and seems to be moving around pretty well. It's been four weeks since his surgery so his chest is pretty much healed up. Only two more weeks until we can pick him up under his arms again.

I don't want to jinx us but I'm pretty sure we will be able to leave sometime next week. Dr. Pearl is willing to send patients home with chest tubes (some surgeons don't ever do this) so we might go home with one. I'm not sure how I feel about that...makes me really nervous to be honest...but I want to go home!!! We need to be a family again.

Every day of being in the hospital is a humbling experience. Today I just met a family whose baby is only two weeks old and has to have a heart transplant. Something went wrong during her surgery (human error) and now she is on ECMO (for those that don't know that is similar to a bypass machine with a few small differences and is only for the sickest of kids). I can't even imagine being in their shoes. Isn't it crazy that there is always someone who has it worse off than you do?

I am grateful for this experience and the way it has changed me. My perspective on life has changed. I am a better person. It is humbling to think about how many people are thinking about and praying for Kyson. Miracles are bound to happen when so many prayers are headed his way. This week we have definitely experienced a miracle as we have seen his drainage slow down so he won't have to have another surgery. My heart is filled with graditude because of this. I just can't wait to go home and be a family again...