One year ago...

This is going to be the gory post.  Anyone with a weak stomach might want to skip the pictures.  Sorry, I don't know how to make them optional.

Yesterday marked the one year anniversary of Simon's heart surgery.  I can hardly believe all that he has come through and where he has led us.  Ten years ago I never thought I would be anywhere near where I am today, and it is because of the people around me that I love that gently push me to try new things, and my kids that sometime leave me no choice but to do things that scare the daylights out of me. 

We ended last time with Simon being in the hospital and waiting to go to Edmonton.  In earlier posts I had mentioned the ten ticket ride.  The one that you know is scary because of how many tickets it takes to get on the ride in the first place.  Well, this was kind of cemented for me when we began our trek to Edmonton.  We were at the hospital very early in the morning to get our details together and be on time.  We hung out with Simon for a while, laughed with the nurses and just had a bit of fun.  All the while, in the back of my head and in the pit of my stomach there was this niggling nausea and trepidation.  It was the same kind of feeling I had when I was making the drive to Bethany for my first year.  Excited, but also very nervous.  Not exactly knowing what was going to happen, but knowing that there was someone looking out for me.  As I think about it, I can kind of get the same feeling again.  Interesting.  Anyway... we finally got our traveling nurse and headed down the elevator to the medi-van that would take us to the airport. 

Simon looked so funny in his tiny car seat on the big stretcher.  He was unfazed by a lot of the fuss.  So back to the roller coaster.  After we got off the elevator we began walking toward the doors and the van.  Our suitcase made the same type of sound on the tile floor that the roller coaster does when you are being cranked up to the top to begin the ride.  It was very eerie and also very fitting.  With that sound came a huge surge of adrenalin.  There was no reasonable way to get off the ride.  It was out of my hands, so I may as well have fun while we were on the ride.  Andrew on the other hand, was still very nervous.  He has always been a bit squeamish and wasn't looking forward to this at all.  So, I just let him be and did my best to enjoy the ride and make sure that Simon was comfortable. 

We took a life flight plane to Edmonton, and Simon did amazing on the flight.  He didn't cry at all and just looked around at all the shiny things.  

We got to Edmonton and got settled in.  The hospital was beautiful!  It looked like a mall.  There were skylight domes and walkways three stories up, and fish tanks, and a food court, and it was all very big and very new.  We felt like we were on a holiday.

After two full days of regular hospital life, which was full of pre-op tests, and x-rays we were finally getting ready for the big day.  We got the tour of the PICU where he would be after surgery, and were given the details of how things would happen and what order they would happen in.  We let them know that Andrew was queasy and they had a strategy for that too.  I enjoyed not being the one making decisions.  Everything was laid out for us.  We had a beautiful hotel room right across the street and internet access to keep people updated.  We had a food allowance and no Elizabeth to look after.  All we had to do was be at the right place at the right time and love Simon. 

We met up with my former pastor and his family.  They were a huge support for us.  They gave us rides to places, invited us for supper and spent time with us catching up and taking care of us. Thanks Don and Sharon for being willing to be with us.

We met the surgeon the day before surgery.  I remember looking at his hands and wondering how steady they would be as they opened up my son's heart and did some needle point in there.  When we asked him the stats on fatalities, I wished I didn't do math very well.  The odds of Simon having Down Syndrome were 1 in 800.  The chance of something happening on the operating table were 1 or 2 %  That means 1 in 100.  I didn't like those odds.  Think about something else Sara.  Whatever, it was out of my hands.  

The day of surgery we were at the hospital early for his sterile baths.  He had to have three antiseptic baths to kill bacteria that could be harmful during surgery.  He wasn't a huge fan of them, but that's the way life goes. 
We took him downstairs to meet the anesthesiologist.

That was my favorite part.  I handed him off to someone else who was more capable at taking care of him than I was.  That was the most free I had been since he was born.  There was absolutely nothing I could do but pray, and I knew there were a lot of people doing that as well.  I was officially off duty for at least four hours.  Simon was going to be better after the surgery.  Until then there was no point in worrying.  

So we went to West Edmonton Mall.  We ate lunch at the Old Spaghetti Factory, we watched the sea lion show, and we rode the bus back to the hospital.  We waited, and waited, and I was so glad that we had gone away for a while.  To sit there waiting for four our five or six hours would have been crazy.  We met a girl whose fiance had his arm badly injured in a work accident and he was in surgery as well.  It was great to have someone to wait with and pass the time.  Finally we saw the surgeon coming down the hall to talk to us.  He said everything went well and explained the details of what he had done and what things might have to watched later.  Then he left and we waited for Simon.

Finally we saw a bed coming down the hall.  There was so much medical equipment on and around it that it made Simon seem impossibly small.  It was pretty intense, but we were told that there was a lot of extra things because they were switching him from OR machines to ICU machines.  Things would get tidied up after a little while.

I am still very impressed with how they walked us through all of the contraptions in the ICU.  Because Andrew was squeamish they had Simon covered up with a sheet.  Then the nurse started at the top and explained what was all hooked up to what and for what reason, and as he talked he kept rolling the sheet farther down until we could see all of Simon.  Looking at the pictures now it does look pretty crazy, but at the time, all of the lines and wires made perfect sense and weren't the least bit intimidating. 

I noticed at one point while he was still on the ventilator that his tongue was moving rapidly up and down.  After a few moments I realized that even though he was highly sedated he was trying to suck on his tongue to self soothe.  Our bodies are very magnificent things that even when we are weak and wounded, we still try to preserve ourselves.  Way to look after yourself Simon!

I still think this picture below is pretty funny.  I tried to find a part of him that wasn't hooked up to anything, and realized only later that his foot has an iv in it.  Oops.  Guess an iv didn't seem like that big of a deal compared to the other major appliances that he had working for him. 

I had a hard time believing that only two days after open heart surgery I was able to hold my little boy again. 
We sure had a tangle of wires and tubes to keep clear of. 

Andrew and I had a couple of lunch dates with friends and family from Edmonton and then we were back to the grind of caring for Simon.  Two days after surgery he was sent back to a room on the ward.  He was off morphine and was only to be given tylenol if we thought he needed it.  48 hour and on tylenol.  Wow.  The smaller they are the faster they recover it seems. 


Finally on Friday, four days after surgery, Simon got to meet Grandma and Grandpa Wiens.  They flew to Calgary where Andrew's sister and her husband live, and then drove up together to Edmonton.  I thought Grandpa was going to pass out when he saw Simon, but alas, I don't think anyone had any weakness in the knees at all!  (I was a little bit disappointed)

There are many more tidbits that I will continue to add, but that is pretty much the gist of our surgery experience.  I would not like to ever do it again, but all in all it was a very positive experience with a lot of positive people. (Including my cousin Peter who crashed in our hotel room for a couple of nights while he was doing internship and fellowship interviews)

I'm sure I am forgetting something, but there's always tomorrow.
Until then,
Sara