Tuesday, September 17, 2013

Pre-Op Day

Monday was Pre-Op day for Jacob at the Cardiac Clinic in SickKids.  Thankfully most of the preop requirements had been completed last week - Echo, EKG, bloodwork, and Cath so they had most of the information they needed - but it turned out that an unexpected complication had come up with Jacob's Aortic archway.  This archway appears to be either narrowed or blocked, but different tests are showing conflicting results because the Echo shows it as narrow/blocked but the Cath shows it to be fine.  Because of this Jacob was sent for a CT scan yesterday afternoon - a thoroughly torturous experience because it took two teams to get an IV into him for the dye, and Jacob was so upset that he was purple and soaked through with sweat by the end of it.  When the IV was finally in place Jake was exhausted and fell into a sound enough sleep to sleep through the whole scan, in spite of the very loud machine noises and flashing blue/green lights! It was like a space ship taking off in the room, and Jake slept right through it...He didn't even notice that his arms were strapped up, and he was being moved around inside this huge machine.  We will know tomorrow (Wednesday) what the team has decided for Jacob based on this CT scan.

The artery that we have been worrying over, and praying over for awhile now is indeed narrow, and needs to be patched.  The Surgeon, Dr. C. didn't seem to feel this was a big deal - he showed more concern over the possible arch complication.  Then, the icing on the cake was that the team felt that Jacob's pacemaker should be replaced now during the Glenn procedure, and the single pacing wire on his heart should be replaced with two pacing wires so that both ventricles are being paced.  The reasons for this suggestion are based on battery life of the device, and on the changes that the upcoming procedure will make in Jacob's heart.  To make this decision, Jake was fitted with a holter monitor that will take readings of his pacemaker use for a 24 hour period.  It's a medium sized box hanging outside of his clothes, and his chest is literally COVERED in wires, stickers and tape.  Here he is being set up by the pacemaker lady, and not minding it at all.  This boy amazes me at every turn.



 So, Jon and I felt like...our fears were confirmed with the left pulmonary artery needing patching, and then it was double whammy of unexpected news between the Aortic Archway and the Pacemaker.  Tomorrow morning the whole team meets to discuss Jacob's case, and the big decisions will be made and then communicated to us.  Because they are reopening Jake's chest in the same spot the team will have to deal with scar tissue, and from the description we were given this can be a very complex and sometimes dangerous task as the scar tissue from the heart can attach itself to the sternum where the opening is made.  I shiver at the thought of it...Jake is so small! One of the hardest parts of Monday was signing the consent form that listed all possible complications - from death, stroke, kidney/liver disfunction, brain damage, bleeding and so on.  The likelihood of death is very small compared to his last Norwood procedure - it's 2% instead of 20% this time.  But these other possible complications have higher risk, and my mind feels like it will implode when I go there.  So, I'm not going there.  My God is bigger than these risks, and I believe with every fiber of my being that he is holding Jacob's life in the palm of his hand.

Georgia is doing well with my parents, and looking happy in all the pictures we see of her.  She had a breakdown over the phone the last time we talked, and that was incredibly hard on the heart but the plan is for her and Mom to come to visit us after Jake's surgery.  The surgery is schedule for Thursday morning, we have to be at SickKids by 6 AM with Jake on that day, and the surgery will likely be a long one - not because of one big complicated procedure but because of several "small" things being done at the one time.  It's 98% likely that Jake will come out of the OR with his chest already closed and will be extubated very soon after arriving in critical care.  I'm praying that all goes smoothly for my treasured boy, and that we will be home with him in no time at all.

In a really cool turn of events, one of my Heart Mom friends - Daina - is going to be at SickKids with Isaiah for a Heart Cath next week.  Georgia will likely be here at the same time, and that's really cool because she loves Isaiah.  It's so heartwarming every time I lay eyes on that boy - he's so big and strong, and no one would ever know that he has half a heart and has come through so many struggles to get to where he is today.

Over the weekend we had visits from Heather and Aliyah, and a outing to Danish Dreams for dairy free frozen yogurt with Krystyne and Darcie.  Tonight I'm meeting up with my friend from high school/university, Kate.  I'm trying to make the most of these spare moments before the surgery, because there will be no free moments once that surgery takes place.  Oh, and I got to eat NACHOS! Made with dairy and soy free cheese - it does exist!

When I stop to think about the upcoming procedure, I'm so scared, but I'm using all my strength to not dwell on that and to enjoy these days of cuddles and time with my amazing superbaby before this next trial begins.  Please keep Jake in your prayers, especially on Thursday and the days following the procedure.

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