Recovery- Day 8

Dr. Wells came out at 12:30. Everything went as expected. Only one scary, little surprise. 

Having his diaphragm fully expanded for so long caused his right lung to partially collapse. After plication, his lung returned to normal. 

We were able to go to Santi's new CTICU room around 1pm. I've been laying with him ever since.  

He has a 3 inch incision across his ribs. They removed his chest tube, but placed a new one lower on his belly. So many battle wounds for our little warrior. 

Surgery is underway

It was a long night, followed by a rough morning. In preparation for surgery, Santi was NPO since midnight, meaning he couldn't have anything by mouth. Naturally, he was not thrilled about being denied water and fruit for breakfast. We did our best to keep him distracted this morning while waiting to hear what time he'd go to the OR. He loves watching daddy draw on the whiteboard!

Luckily, they came for him around 10am. So his suffering was not prolonged. 

This morning has been the hardest of all the entire Fontan stay. We were blindsided by this procedure and had little time to prepare. Santi was thirsty, tired and uncomfortable. He kept screaming "mommy, mommy," pleading for me to help him. To protect him. To make everyone go away. He calms down when I snuggle my cheek up to his and shield his body with mine. "Hug,  HUG!" He says through tears.  It brakes me to pieces. 

We are his parents. We should be able to protect him and keeping from suffering. How do we do that when we are faced with the necessary? 

They took him at 10:30. Each time it gets harder and today was no exception. We hope to hear something soon.  

We appreciate the endless love and prayers​. We feel it. Santi does too. 

It's 4:30am

I'm wide awake and anxious. 

This has been the most restless night all week. I'm not sure if it's because we have surgery later today, or if it's because we've had an awful night nurse and assistant. Probably a little of both. Why are they awful? They have been very disruptive and inconsiderate. The type of night team that is simply checking off to-dos without being mindful of the importance of sleep for a toddler. The only thing I can do at this point is let our charge nurse know that I do not want them assigned to us again. And I will. And if you ever have a hospital stay with your child or loved one, know that you can always speak up. You have a say in who cares for you. 

After being awake and mad for a few hours the reality of another surgery set in. The Fontan didn't scare me. We knew it was coming and we were prepared. We kept Santi healthy and quarantined for a few weeks leading up to it.  Going into it, I knew he had all the strength he'd need for a successful surgery. 

Todays surgery is unexpected. Santi has been in-patient for a week. He's recovering from major OHS. He has been in physical contact with more people here than he was at home, Healthcare providers who are in contact with many other people who could potentially be sick. His incisions are healing and he's been poked for blood draws numerous times, potentially exposing him to infection. He has had poor nutrition with his clear liquid fruit only diet for the past few days. His body is tired. What if it's too tired?

Please help us get through today safely and back on the road to recovery. 

In other news...Santi received a wonderful surprise yesterday! His heart buddy Maverick, in NY, sent over a thoughtful gift and a big balloon. Oh that smile! He was so excited. Thank you Mav, Nikki and Charlie!! You made his day!

Recovery- Day 7

We are one week post op, but it feels like we've been here for months. We spent the first four nights in CTICU (cardio thoracic ICU), the next two in a shared room (not fun) in CV Acute and last night we were moved to private room, yay! 

We had another restful night of sleep. They really respect our wishes of not disturbing him while he sleeps. We no longer have to wake up at 3am for meds. Hooray!

Santi started today off with a trip to "Mommys bed" by the window. He enjoyed the change of scenery and sunshine. 

My gorgeous boy

sweet cards and posters from our stroller strides friends decorate his room

Daddy recreated his favorite scene from Cars for him

But the fun stopped there. 

The surgery team came in late this morning to inform us that Dr. Starnes agrees with the cardiologists that plication of his diaphragm is necessary. He is scheduled for surgery tomorrow, mid-day.

They will access his diaphragm by making a new incision on his right side and separating his ribs. Then they will suture his diaphragm down so it no longer expands. I can't tell you how sad and angry Abe and I are over this.

Paresis of the diaphragm during open heart surgery is fairly common, but it's also avoidable if they are cautious of the phrenic nerve. At some point during his Fontan, his phrenic nerve was disturbed or damaged causing his diaphragm to expand in a state of shock or paresis. It might/maybe/possibly heal itself over time, but that isn't guaranteed. And until it does, it's crowding his lung. As you can imagine, that's a very dangerous scenario for a single ventricle kiddo. 

Our little guy has been through so much. The suffering feels endless. We know this is necessary. We know this is temporary. We know we will get to take him home soon. We know we will see him running and playing again. But man, enough is enough. Blessed are the families that never have to see their child experience this type of pain. 

Please continue to send love, prayers, positive energy and healing thoughts to Santiago.