Why that name

Just a quick note - I chose this title for my blog because if any of you have tried to actually go up the down escalator it is a lot of work. When my son Simon was born, I was figuratively transported to the basement. I was struggling to find out what this meant for our family, and our future. I began a journey on that day, to go up the down escalator. I know it will always be a lot of work to keep going up, but that is what I have to do now to stay out of the basement. Simon has Down Syndrome, but I am choosing every day to make life normal for him and to help us get back to the ground floor. Anytime I forget the joy and stop moving forward, I find myself rapidly descending into the basement again. Thankfully I also have an emergency stop button. He is my Creator and my Father. The One who brings the despair to a standstill when I call on Him. He is my Rock and Refuge. The One I can run to when no one else understands. It may sound cliche, but it's true, I couldn't do any of this without God. He is the reason that some days I can still smile when things are ridiculous inside. That is why the name.

Thursday, January 27, 2011

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,

Sunday, January 23, 2011

Simon's first Christmas and then some

I have been trying to be committed to blogging about once a week, but as you can evidently see that has not been happening.  I have been doing better at adapting to our new life and therefore feel less of a "need" to blog to process our lives - but I still feel like the first year of Simon's life needs to  be shared in order to understand better where he is at now.  So.....

Last Christmas was a lot different that this year.  First of all Simon was still being tube fed.  I was still expressing myself for his benefit, and we were only three months in on the crazy journey.  I strung popcorn for the tree while watching a DVD about the first 18 months.  It was very helpful, and yet very overwhelming at the same time.  I was doing alright in watching it until I got to the part about speech and language.  One professional commented that if a baby with Down Syndrome doesn't nurse or bottle feed properly that will seriously hamper their oral development.  Crazy lady - do you know how hard I tried to do both of those things!!  I still get a bit lonely for the bonding between a baby and mom sometime.  Oh, and by the way lady- my boy says "Da da da" and "Ma ma ma", and "blah blah blah" although not always in that order. I digress.

We had Christmas dinner as a family, and then my parents and brother came in a couple of days later for the family gathering.  It was interesting having my extended family meet Simon for the first time.  At that point he was still tube feeding every three or four hours, so they got to experience that twice in the evening.  The first time being pretty much the moment we walked in the door and started assessing where to hand the feeding bag.  He was still pretty barfy too so that meant that I was still on call for most of the evening.  On the other hand, it also opened up a whole new dialogue between my aunts and uncles.  Simon had taught us not to hedge around the awkward things in life, and just to ask the questions about the obvious things that no one wanted to ask, but everyone wanted to know.  Thank you Simon for teaching us about the joy of being open and up front.

We went to supper at the Froese house a couple of days later, and Simon might enjoy knowing a bit later in life that his feeding bag was hung from a mounted buck's antlers.  I still can't believe how much time I spent expressing and tube feeding.  It was a huge blessing that Andrew was able to help with the feeding as much as he was.  I know he suffered a lot from lack of sleep too.

The fun began a few days before the Froese supper.  We found what no parent should find in their child's diaper.  Blood.  We made an adventurous trip to the hospital and were told that it was probably the virus that was going around and if it didn't clear up in a couple of days to come back.  Well, New Year's Day it came back, and that day Simon did not.  He was admitted to the hospital for observation which is pretty much what we were expecting.  What we weren't expecting was to be given the gears for wanting to go home and get some much needed sleep.  The bad thing about being and open minded person is that you can see both sides of issues.  Yes, the hospital is terribly understaffed, especially at night, and they were expecting our baby to be awake and crying most of the night.  What they didn't know was that at a mere two and a half months old our baby would sleep for approximately 10 hours solid.  We were frustrated when we left, but yet felt very little guilt.  I decided the next day to start staying at the hospital, so we again began the search for volunteers to look after Elizabeth and give rides to and from the hospital. My parents came in from out of town to help out while Andrew went to work.  After two or three days in the hospital I had a breakdown night.  When I arrived at the hospital in the evening Simon had a fever and was what I would call delirious.  He did not want to be held by me or put in his bed or anything.  This was completely unreasonable for our very laid back little man.  I called my nurse friend over from the general hospital, and she came and talked me down as I sobbed out my frustrations.  Janine, you were a lifesaver.  Thanks fore being there to interpret both me and the medical system.  We have always appreciated your words of wisdom.

I had a fitful sleep in the hospital room and I think I called Andrew to pick me up at four in the morning?  I don't remember.  Somehow, I was at home when the phone rang at 6 in the morning.  It was my Aunt calling for my Mom.  My Uncle had died suddenly of a heart attack.  He was a young and vibrant 63.  Then the phone rang again at 6:30.  Simon had been moved to the PICU because he had pneumonia and was having trouble keeping his oxygen levels up.  My mom had just called a nurse friend of hers the night before and had been told that as long as Simon stayed out the ICU we should not be too concerned. 

So we began the week of keeping our head above water.  My parents rushed home to pick up funeral clothes, and we put on a brave face.  The Olympic torch came through Winnipeg and we were late one morning for rounds in the PICU.  The doctor, with whom I had shocked (a little) with my black humor, gave us a good-natured ribbing for being late.  Apparently passing the torch was an acceptable excuse. 

Simon made it out of the PICU just before Uncle Tim's funeral.  The nurses gave us a grudging day off for the funeral, and a friend took Elizabeth for the day and her first co-ed sleep over.  The things I never thought would happen four months prior.  We still feel the loss of Uncle Tim.  He was my favorite uncle (sorry all the others) and he has a great family. 

We began the slow wait of figuring out what was wrong with Simon.  The blood in his stool was gone, but we had to figure out why it was there in the first place.  He was still having episodes of emesis (vomiting) and other than him not tolerating his secretions well (he couldn't handle his snot) we couldn't figure out what was wrong.  It was dragging on and dragging on.  He had a PICC line put in to give him TPN and his fluids were pretty much kept to a minimum.  (He had an IV put in that went near his heart, and it gave him IV nutrition.)
At this point we weren't holding our breath for him to come home anytime soon.  The question was always, how long would it take for us to be together as a family again?

At long last it was decided with the Edmonton team and the cardiologist and the  regular doctors that we should move his surgery date to an earlier time and see if we could get his ticker fixed, if that would solve the other issues as well.  If not, it would at least eliminate one problem.  So, it was decided.  We were going to fly to Edmonton on January 24 and he would hopefully have surgery on January 26.  There were a lot details to iron out, but with the valiant efforts of our variety social worker, we were finally getting there.

I will leave the surgery posting for another day, and be warned, I will include graphic medical pictures.  Just so you know.

Time goes on whether we like it or not.  Let's make the most of the time we have.  Goodnight.