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!
3 thoughts on “Next step”
My heart breaks for you as I tearfully pray for you and Josh and your family! May God's peace and comfort be with you as you await the next step that needs to be taken.loveHope
Lord, our gracious and heavenly father,You know better than any that we are all born with a broken heart. Our sins separate us from you from our first cries till our final breaths, yet we know with certainty that you are present in our lives, drawing us nearer to you, and healing each of our hearts. Lord, we raise up Joshua to you, for his heart is in clear and present need of your healing. We humbly ask you to fix his heart physically, to return all normal function and form so that he can lead the fullest life possible. Let him be a living example of the miracles you perform each and every day in this world. Heal his heart emotionally too please Lord. He is the smallest of children, and he sits at your feet, crying in fear. Bring him onto your lap and hold him. Let him feel your comforting grip around his shoulders, allow your peace to penetrate his soul and calm his heart. We know you have Joshua in your palm, guiding him through you plan, and we simply pray that he can feel secure knowing you are his loving and protective Father in Heaven.Lord we ask that you send inspiration and insight to the hearts of Joshua's medical team. Show them the way forward in the safest and least invasive manner possible. In whatever procedure is necessary, let your hand guide theirs, and fill their souls with the Holy spirit so they have access to all your divine healing, knowledge and ability.Shower each nurse who comes into contact with Joshua with patience and gentleness, and with the ability to make him smile during times of fear. For we know that you gave us laughter as a way of healing as well, but it is often difficult to smile, much less laugh when we are afraid. Remind us to see the small things which bring us Joy, and which ultimately reveal your wonderful Nature to us. Lord, finally we ask you to infuse the hearts of Joshua's family with Grace and Courage and Strength. Through you all things are possible, even when we feel far from you, even when we are afraid, and most of all even when we feel weak. Hold this family in your own heart, for we truly know that there each of them will find the healing they all need. All this in Jesus name we pray,Amen
Song playing in the background. Gloria by worshipmob…. the words start off in perfect unity of agreement with my heart for your family. Lord,savior, deliver, defender of the weak… humbly we bow, Lord we need your help, your childern cry out, Lord please heed our call.Father your word says to not have fear or anziety in anything but to make our needs known to you, and your peace will be ours. Lord I pray for that kind of peace for this family, guide them and give them strength. Lord open the ears and eyes of the family and doctors so that they will be guided by your Holly Spirit. Lord we worship you…. through every trial, through every tear that falls, we lift our voice in praise of you. We STAND in YOUR PROMISES! By the blood that was shed, we are healed of ALL THINGS. Lord I stand on this promise and speak to the heart of this child, to the valve, to the heart strings, to the flaps, to the muscles of in the heart….. I speak strength, restoration of the nervous system to the nods, let the heart fire in perfect rythme, just has God has designed for you to function. I claim all these things in the Name and the Blood of Christ. Lord we give you glory for the healing. I give you praise and glory LORD…. thank you Father… amen.