Alistair impresses us in many ways. This countdown he has come up with to countdown until his surgery was all his doing and wording. It displays to us the fact that there are glimmers of understanding and optimism inside the kid who verbalizes mostly concern and negativity. Of course this is a natural reaction from someone who is staring down the barrel of a major surgery. We sat down to breakfast this morning when he told us one more day. By this afternoon he was blaming us for not doing something about this when he was a baby or even as far as for having him in general. The hospital environment draws out the most negativity. When we get home to our stuff and the ability to watch TV or do Minecraft (escape), his optimism and rational understanding returns. Needless to say, we have been riding a pretty emotional roller coaster today with him.
We started the day with a big breakfast filled with all the things Alistair enjoys. After breakfast and after he got to remove his Holter Monitor, we took Alistair to the YMCA (not nearly as nice as ours!) to go swimming. It was fun until the summer camp infiltrated the pool, then we felt squeezed out and left. But I think he had fun and it was something he really wanted to do. No more swimming until the end of August!
After we showered and ate lunch, we headed to the St. Mary's Campus of Mayo where Alistair will have his operation and will be staying. We first met with a social worker who seemed a little taken aback by his "Fan Club" (Seth's parents came with us since they are going to be part of everything too). I think we were far too educated on the subject at hand and processing it in a healthy manner that she seemed to be fine handing us off to the Child Life Specialist for a hospital tour within 10 minutes of our appointment! The Child Life Specialist went over some of the more detailed aspects of things Alistair will experience while still conscious in the OR. Then we went on a tour of the ICU, the patient rooms and the activity room. There is Bingo on Tues and Thurs where Alistair could participate from his room via CCTV if he chooses. There are video games in the activity room and there are therapy dogs that come around...which Alistair for sure wants to partake in!
After our tours ended, we headed to a consult room where we met with the big guy - Dr. Dearani. He was such a nice man and did a great job explaining everything in great detail. He illustrated on the drawing above how Alistair's heart is now versus how it should be (the actual drawing) and how they are going to fix it. But the shit got real...too real for Alistair and after crying for a couple decided to take a walk with Grandpa. The rest of us stayed and listened and asked questions until we ran out of them. He was patient and informative and reassuring. But he talked about a lot of scary situations and prepared us for things that could happen. He thinks Alistair will probably be on a vent through Sunday, which means he will be out of it until then. He thinks Alistair will probably be in the hospital for 7 days, which is what I was prepared for. He also mentioned, depending on how his body reacts, there could be a small chance that Alistair's chest will be left open because of swelling and will be closed in a day or two, depending on when the swelling goes down. The chance is small, but he mentioned it because if it happens he didn't want us to be caught off guard.
We are back at the house now. Alistair requested lasagna, garlic bread and salad for dinner (some of us might have a little wine too). I need to call in a few hours for the time to be at the hospital. I expect the sleeping in the house tonight to be spotty at best!
We will do our best to post updates tomorrow. I will certainly do a blog post at the end of the day. I will update on facebook as I can. Thank you to EVERYONE - we truly are blessed to have such wonderful friends and family everywhere. It is comforting to know so many people are pulling for our son and holding us in their thoughts and prayers.
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