April 16, 2013
There is so much to say, so much to worry about and yet also so much to be thankful for in the next post.
Let's start with the phone call I finally recieved last night during dinner... Our Cardiologist called after the meeting with Surgeons and explained a LOT... so bear with me.
The doctors feel that something is needed, we have a few options as I mentioned last week. The first option is a Tricuspid replacement (a valve they have tried twice now to fix without success). The second option is called a shunt (half of a fontan procedure) where they take the vein supplying de-oxygenated blood straight from the neck, bypassing the right side of the heart and dropping it right to his lungs using gravity. The third option is to do both while they have his chest open and heart already on bypass.
The shunt procedure is something that can not be undone, it irrevocably changes the make up of his heart and should it not work we are looking at heart transplant. Our Cardiologist said 'given Josh's history of being on the side of rare this is something we need to think about before doing'. I have to admit that it gives me much pause as well. Always before his surgeries have moved to place of 'fixing' his heart, and being 'fixable' should something go wrong (case in point was the pulmonary valve that Josh rejected the first time around). The thought of coming to place of needing to be put on a transplant list makes me feel ill on many levels.
So, the doctors (one of whom was his last - and best) surgeon have decided that they want a more comprehensive look at this heart. He will be sedated and they will send a catheter through the groin and into his heart to run some tests to get the exact measurements and pressures of his heart, then they will get an image using the Cardiac MRI. This should all take place within a month. Once they have the images they will meet again to finalize a plan for going forward.
On Thursday morning when I woke up I had such a feeling of despair, I was terrified and sick and worried and every other possibly emotion that one feels in a situation like this. Before I left to pick Josh up from school I prayed that God would somehow let me know what the right choice is, and that he would confirm for us that this is absolutely necessary before we again place him on a table. When I got home there was a letter offering us the placement at Bloorview, this sounds morbid... but it gave me a hope for the future. My deepest fear is that we will lose him, knowing that God has a plan for Josh that goes beyond this next surgery gives me infinite hope for Joshua's immediate future. Then yesterday on the way home from school a boy ran past Josh and I, and Josh stopped to watch. Pointing at the boy Josh said 'Mummy, that boys is so fast' to which I agreed and started to move again but I looked at Josh's face and he looked up me with the saddest look on his face. He said 'I can't run fast' to which I asked him why, again, his face filled with sadness he looked at the boy running away in the distance and said 'Im too tired'. My heart ached but there was a part of me that heard this and knew that it was again God saying 'this is not in vein, he needs this, and that is something I really needed to hear going into these decisions.
Last night Cardiac Kids gave us tickets to see the Leafs play the Devils. As it turns out we were in the players box and our host was David Clarkson of the NJ Devils. His mother sat talking with us for a large part of the second period and after the game she invited us to come down to the ice to meet her son. While we waited a man who works at the ACC came over with one of the sticks from the game and gave it to Josh, then we got to meet David who signed Josh's stick and chatted with him for a bit.
This past week has literally been a roller coaster of high highs (Bloorview) and low lows. Last night as I lay in bed I was thinking over all that has happened in less than one week and I have to say, I am so in awe of God's incredible timing, his healing peace and his ever comforting arms.
I think, since most of you who read this have also promised to pray for Josh, that this would be a good time to let you know exactly what we are praying for.
1) I really DIS LIKE the idea of a shunt... I am personally praying that it isn't needed
2) Peace, for all of us as we face this next round of tests and meetings
3) Wisdom for the doctors who are making these crutial decisions regarding Josh's heart
4) the catheter procedure is what caused Joshua's first stroke... please, pray against this during his next one.
5) We will need help with the emotional aspects of this for Josh, please pray that we find the right words to explain it and that God gives him the peace he's given us.
6) while I am going for broke in my requests... maybe we could also ask God to heal him... just generally heal this little man and allow him a full, long and very happy life?
My inbox has been full all week and for that I am so thankful, I feel so blessed by the amounts of people who love our family and who are praying so faithfully for us. Please know, even if I can respond to all of you right away, I have been blessed by you and feel your prayers daily as we move forward. Thank you for your support!