Friday, October 3, 2014

Back to SickKids

Today we went back to Sick Kids.  It's been almost exactly a year since we last walked out those doors to take Jake home after his Bidirectional Glenn open heart surgery.  We wheeled our beautiful, happy, 18 month old boy inside in his stroller...and I cried.  I was fine in the moment before stepping through that door, but once my feet were inside it was like a wall of memories, pain and depression hit me.  We sat down for breakfast before Jake's appointment and I told Jon I'd like to visit the cardiac ward on 4D and see some of Jake's old wonderful nurses.  But when we actually walked towards the elevators to do this...I couldn't.  I just couldn't bring myself to go there.

We had our three appointments throughout the day, with some unexpected turns along the way.  And some good news and some disappointing news.  Before I go into details I thought I'd share this gem of a picture of Jake with the mickey mouse he picked out from the store on Main Street inside Sick Kids...Here he is sitting in the doctor's chair and waiting for the preanaesthetic appointment to begin...

My precious treasure.  He proudly walked all around SickKids today, and inside I was rejoicing that he had come so far since the last time we were there.  The doctors who saw him all had a remark about how good he looked, how well he was developing, and how advanced his language was.  He's my miracle boy - there is nothing half-hearted about how Jake lives his life!

After several twists in our plans, here is how the day ended: The mapping ultrasound showed two possible routes for the GI team to take without moving Jake's pacemaker.  But, cardiology deemed these routes to be too close to the pacemaker to be safe.  The risk of getting the pacemaker site infected was too high.  Instead, they wanted General Surgery to put the tube in using a surgical route.  The problem one anticipated this and no appointment was made with us for General Surgery.  As it turns out, the earliest appointment available with this team is next Friday - one whole week from today.  Jake's SickKids cardiologist is going to try to make this appointment earlier given our out of province home address, but there are no guarantees.  So where we stand now is this: We are here to wait for another week, and when we see General Surgery they will give us one of three options. 

Option 1.  No, they don't feel the tube can be inserted without moving the pacemaker.  That takes us back to square one and needing the pacer moved.

Option 2: Yes, they can insert the tube surgically, and we may have to wait a week or two for that appointment.

Option 2: Yes, they can insert the tube surgically, but their wait list is quite long and we need to go back to NL and come back in a couple of months for the tube.

I am calling on all of Jake's prayer warriors to pray for Option 2.  Pray that General Surgery will do the tube, and that they will do it with only a short wait for the surgery date.  Jon and I have been away from Georgia for only 2 days, and already our stomachs are in knots.  It's awful.  I miss that sweet smile...I even miss that saucy smile.  I just plain miss my girl.  Hug her tight for me tonight, Nanna and Poppa. 

One bright spot to my day - I finally got to meet Baby Owen and his sweet family in person.  I even got to hold him - and he's a perfect miracle from God, and another child who has had such an impact on the world already.  I can't wait to get to see him again.  Remember Owen, Grace and Cory in your prayers too - they are firm in their faith, but Owen is having many struggles on the road to recovery.  Today Grace told me about Owen's room at home, which she has not yet seen as her Husband had to finish the room while she waited near SickKids for Owen's birth.  It's a elephant theme, and yellow in colour.  I'm praying, praying, praying that Owen will be safe at home in his own room very soon. 

So now we wait.  And pray, and pace :)

Jake is fairly happy here at Ronald Mcdonald House, although he does sometimes seem like he's puzzling about where he is.  This morning he asked for Georgia, and our hearts just about broke.  Please Lord bring my children back together soon, and keep them both safe and happy in the meantime. 

I miss my sweet dog too.  I'll leave you tonight with this gem.  Jake decided to climb on Lukey all by himself, and I was lucky enough to capture the moment. 

1 comment:

  1. Lisa, you and your family are in my thoughts and prayers. May God's Will be done and Jake have the best possible outcome in getting his needs provided. Sending <3 hearthugs <3 from Halifax.