Hello, friends. What follows is the latest update on Gus' condition and progress. Long overdue - I know. Thank you for your continued patience! In short, Gus is doing well in day-to-day terms. In the long term, the situation with his kidneys is not much better. He has now reached the point where a formal diagnosis of end-stage renal disease (ESRD) is appropriate. What this means is that we are adding long-term dialysis support and the likelihood of a kidney transplant to our heart journey.
Gus continues to recover from his tricuspid valve repair surgery. His chest has healed significantly from the sternotomy to the point where the sutures have been removed. He only needs oxygen support at night. He is fed mostly via NG, but speech therapy continues to work with him on bottle feeding. His meds are now given almost entirely through the NG - meaning fewer lines. We've enjoyed many smiles lately. With his left-sided palsy, this takes the form of very endearing (and cute) half-smiles. His legs have been kicking with energy and excitement. He is doing remarkably well for all he's been through and everything he is dealing with.
The dialysis situation has also progressed nicely. He is at his goal amount of dialysate and we are working to get his total dwell time down to the point where he can be transitioned to a cycler. Once he is successfully on a cycler, we will be moved from the CICU to the PCU. This is the natural progression towards going home - something we are both excited about and incredibly apprehensive about. That will be a delightful yet difficult transition.
As I said above, today marks a somewhat arbitrary date for Gus' kidneys. The time has come when it is appropriate to diagnose him with chronic kidney disease and (potentially) end-stage renal disease. In practice, it doesn't change much, but symbolically, it hits hard, especially six months in. We never really anticipated our heart journey becoming a kidney journey too, and the prospect of it all is, frankly, daunting (to say the least).
The days and weeks ahead will continue to bring direction into greater focus. We would ask that prayers be made for us in our weakness and for Gus in his continued recovery. He is well into teething, which adds additional discomfort. There is also some concern about swelling and 'puffiness' in the face - is it his SVC? Is it simply the effect of the steroids? A future cath procedure will likely give us answers. Either way, it appears to cause discomfort, so we appreciate prayers for us and his team as we continue to care for him.
Speaking of prayer...
Tonight, members of our local church are gathering after our evening service to pray - to pray, should God will it, for a miracle: for a recovery that, at this point, appears beyond the reach of medical means. They will likely pray for our Father to continue, by the intercession of his Son and through the power of the Spirit, to graciously sustain us and give us wisdom - as he has been - through the difficult days ahead.
We will ultimately pray for his will to be done and his name to be glorified. This is no cop-out, but appropriate deference to One who knows the beginning from the end, One whose ways are not our ways, whose providence is often mysterious, and whose love and goodness surprise us in ways beyond our ability to imagine - the greatest expression of all, of course, being Christ's cross-work, considered foolish by many.
Wherever you are, if you wish to join us this evening in - as some have often put it - "storming the throne" for these things, we would be incredibly grateful. In a word - pray and share! God has already done many great things for us and our son. He has answered many prayers. He has done things that defy expectations. We will keep praying. We will continue to give thanks. Each day is a gift. Gus made me a father, and that is a gift beyond reckoning.
Hopefully our next update will come sooner. 😉