A Very Hard Day

If you had asked me this morning how the day would go, I would never have guessed how it went. It started off so well. We got Alistair up at 5:20 as he had to take a shower and wash with antibiotic soap. When we woke him up, he stretched and sighed and then he realized what was going on and said, "Oh...BOO!" Once we got out the door, we arrived at the hospital, got checked in, and walked to the waiting area. Seth and I accompanied Alistair to the pre-op area, picked out a scrub cap (they had one with vintage airplanes) on it, he asked for one for Seal, got Alistair into pj's and into bed. They then proceeded with a barrage of questions for us and asked Alistair if he wanted something to calm him. They came back with a syringe of a mix of tylenol and a slight sedative that was meant to make him drowsy and a little loopy. Drugged out Alistair was actually a good comic relief. He decided earlier in the week and had reiterated many times that he wanted to go back alone and didn't want Seth or I to accompany him. Even in his drugged out state, he still insisted that he, his animals and the nurse were the only ones to go back. Grandpa and Grandma got to come back and join us for a bit before he went back. When it was time, we told him we loved him, kissed him and told him good luck. The nurse snapped a photo for us, which was nice!

We went down to the cafeteria for some breakfast. It was fine, nothing too exciting, but good to get some food. We then headed to the waiting area. Seth and David worked on tablets or read while Judy and I worked on a baseball history themed puzzle. The nurse would come out from time to time to update us on the status of surgery. After he was taken off bypass, Dr. Dearani spoke to us to tell us how the procedure went. He said it all went well, the Cone Procedure was a successful repair and they were monitoring his rhythms because they were a little irregular, but were hoping they would normalize soon. With that news, we headed out for a bite as we still had a couple of hours before we would be able to see him. 

When we returned and were heading up from the parking garage, Seth received a call from the Charge Nurse who was frantically trying to get a hold of us. We met her by the elevators where she took us to a consultation room. She proceeded to tell us that things had rapidly declined with Alistair. After surgery they got him stable and brought him to the ICU. Within minutes of getting him there, Alistair coded because of the strain on his heart caused by the irregular rhythms and his stressed out ventricle. He went into cardiac arrest and needed to be resuscitated via CPR and cracking his chest to manually massage his heart. The blessing in all this was that the entire OR team was still around, including his surgeon and they were able to respond instantly. The surgery team placed Alistair on ECMO (heart/lung bypass) and returned to the OR. Dr. Dearani performed a Glenn Procedure (bypassing his heart and connecting the superior vena cava to the pulmonary artery). This means the blue blood from his head, neck, and chest is gravity fed and doesn't go through the right side of his heart. This greatly reduces the amount of work his heart has to do. After this his cardiac rhythms were much much better. His chest is still open with a sterile dressing, which means his skin isn't stitched up and his ribs aren't tied together yet but are closed. He will remain on ECMO until it's safe to remove it (anywhere from 1-4 days, hopefully on the short side of that) which means a return to the OR and will remain open for another day after that (another OR trip to perform the suturing of his ribs and skin). The surgeon said we get to do one thing to him a day. If we progress too quickly that's when you run into trouble.

We finally got to go see Alistair around 6:15 or so. He didn't look as bad as they made it seem. He has LOTS of tubes and wires coming out of everywhere. He is a little puffy from the trauma to his body and the build up fluid. They will be working on draining that off of him slowly. He will probably be asleep all weekend, we won't have any conscious interactions with him for a few days.  

Today has been awful...I think it officially has been chalked up as my worst, probably Seth's as well. By the end of the day we were both just emotionally drained. Nobody slept well last night so we are all exhausted and stressed beyond belief. Seeing Alistair and getting to touch and kiss him made me feel much better. We have a tough weekend ahead of us, but I think by taking it one step at a time, it will be mostly steps forward.

Meet Zebra. Zebra has been with Alistair from the beginning. He is his most precious animal. His ears are worn from Alistair rubbing them and his neck could use some support, but he has been through thick and thin with Alistair. He sat and watched over him when he was a baby in his isolet and now he is keeping an eye on Alistair while we go home to rest.

Seal is also with Alistair and helping Zebra keep an eye on Alistair for us! He even got his own scrub cap!