Recap of the day

Today is finally coming to a close and it was absolutely amazing! You can only imagine the incredible emotional roller coaster we have been on - and still are on. Stressed out and worried all day, and so elated with how beautiful he looks and how well he is doing right now! Still we are very much not out of the woods yet (as the docs keep reminding me), but we are still in a much better place right now than we had expected! Thank you so much for all of your prayers and support throughout the day! They really helped us all so much today! So please keep them coming!

The next 24-48 hours are critical. We are watching extremely closely and trying to balance his meds to keep him calm and happy, but also control his breathing and blood pressure. His blood pressure is a little lower than they would like and doesn't want to come up yet, but we are watching it and it is certainly not in a danger zone right now. He is very fidgety and it is going to be a balancing act all night trying to keep him calm, but not too sleepy that he doesn't breathe enough on his own. He does love to fight the sedation meds so this might be interesting LOL! He also has a fever right now, so IV Tylenol is being ordered.

Another issue they discovered during surgery was that they had a hard time placing his TEE (transesophageal echocardiogram) tube down his throat. They questioned me as to whether he has any swallowing issues. I reminded them of all the swallowing issues of his past (feeding tube, constant reflux, multiple swallow studies) and even the most recent gagging issues with food. They are going to perform a bedside barium swallow study during his admission to make sure there isn't a stricture causing any swallowing issues. Hopefully that is not the case, but we will look and see if there is any reason for these issues he's been having.

Right now his oxygen saturations are 96-97%! It is absolutely unbelievably amazing to see him pink and looking so incredibly good! He has never hit 90% even while sedated, so this is incredible! He is currently on the ventilator (40% oxygen) so his numbers may drop after he is extubated. We are hoping to extubate in the morning, but currently he is completely dependent on the ventilator. He is taking no breaths on his own, so we will be weaning overnight and will see if he is ready in the morning to take out the tube or not. That is of course unless he fights the sedation wean enough tonight to make us pull the tube earlier, but hopefully that will not be the case!

Right now he is getting platelets since his count is at 90 and that is a bit low. He has three chest tubes and one is draining pretty well, so that is most likely the cause for needing platelets.

Please keep us in your thoughts and prayers as we go through recovery. The docs just had a big discussion about how to balance his meds to help his blood pressure and also making sure his heart rhythm is steady. He has had issues a LOT in the past with arrhythmias so that has everyone on their toes tonight!

I will update again tomorrow hopefully with more wonderful news! I am adding a handful of pics. I do want to warn you that they are post-surgical pictures. But he looks so amazing and PINK! I just can't stop staring at him! :)

I love those pink lips!

Pink fingers!

Pink toes!

97% oxygen sats! I pray they stay this good!

Dr. Zahka (cardiologist) is so excited that Ethan no longer matches his purple tie!