Yesterday was filled with anxiety and frustration, and left me exhausted by the end of the day. I got a call in the early afternoon to say that the Head of Cardiology was out of the country and that they would not be having the meeting to discuss Josh’s appointment until June 13th. I felt like I had been punched in the gut, an odd reaction maybe since I was okay with denial on this one, but at the same time I needed answers. I tried to tell myself that God was in this, he was delaying for a reason, maybe just maybe he had a plan. Telling myself something and really believing it are often very different though and I felt let down, and as I mentioned, totally exhausted. I tried to believe that hope was there, that hope was what we were clinging to but the reality of the words she said to me were really nothing more than ‘wait’ and I am not a very great ‘waiter’. Patience is not and never has been something I excel in.
Tim decided to write to the doctor directly and ask her what she thinks the timing will be so that we can have a sort of plan, a sort of answer. That we have something to pray for, something to hope in or at the very least something to prepare ourselves and Josh for.
The answer that we got back was this:
“n re-reviewing the last two echo cardiograms there has been an increase in tricuspid regurgitation but the right ventricle has not increased in size as I previously thought (although the size is also not decreasing on the trajectory I had hoped for after surgery). I think valve replacement is probably inevitable but the group may not feel it is necessary yet and I think we have at least months if not years of time to monitor things rather than needing to move more quickly. I suspect a reasonable amount of our decision making will be based on how Joshua is doing clinically as well as the changes in echo measurement over time.
So overall I don’t think the current delay will be clinically detrimental although it is frustrating. I did feel it was essential to have my most experienced colleagues present to have a meaningful discussion about things.
I hope this makes sense but let me know if you have more questions otherwise I will be calling on June 13th.”
My heart this morning is in a new place, a new hope has been offered and once again I see God’s hand moving and working. Yes, we could still be facing surgery in months rather than years BUT, and this is a big BUT… prayers from around the world are going up on my son’s behalf and it seems that God is listening, we have HOPE! Prayer works, keep talking to God on Josh’s behalf and we may yet see more miracles in the life of our son!
My prayer this morning is one of thanksgiving for the hope we have been given, for the wonders of how a re-look at his test results can change his outcome. Thank you God and thank you for all of you who continue to hold Joshua up before God. Never in my life have I seen so many people band together in prayer for anyone the way I have seen it done on behalf of Joshua and I am awed and moved and so infinitely thankful. My mothers heart cannot thank you enough!
2 thoughts on “Always Hope”
thanks be to God!
I am praying that the delay for two weeks will allow new data to show that Joshua's heart is growing as his doctor wants, with the right ventricle starting to shrink and with the tricuspid valve working well enough for now.I pray for good reasons to watch and wait rather than to schedule a surgery, so that Josh can continue healthy growth until he is large enough that the surgery is less risky.