I've been sending email updates to some friends and family over the past week, but for those of you who don't know, Greg was transported to INOVA Fairfax Hospital (where he had his heart transplant in 2015) by ambulance on Tuesday because he was exhibiting symptoms of rejection or heart failure.
Its been a bit of a rollercoaster since then and instead of rehashing all the details, here are where things stand right now:
The biopsy performed on Wednesday morning was negative for cellular rejection, which is a huge praise! Cellular rejection is very scary and very dangerous.
The first test for Antibody Mediated Rejection (AMR) came back negative. The doctors are currently waiting on approval from insurance to do two more tests, which are rarely done and quite new. We hope to have those results next Thursday. Greg went through some very difficult treatments for AMR in the summer of 2012 and we hope he won't have to go through them again.
In case he ends up being positive for rejection of some sort, he went through 3 days of massive IV steroids to try to minimize the damage of the rejection, if it is there.
Amazingly, Greg's echocardiogram showed normal heart function, which is inexplicable because he is showing all the symptoms you would expect from heart failure. His heart pressures during his catherization were very high, which makes sense because he is retaining a ton of extra fluid. And his kidney function is poor and is only getting worse. He has been on massive amounts of IV diuretics to try to get some of the fluid off of him, but he isn't responding well to them and they seem to be taking a toll on his kidneys, which are already not functioning well.
Because Greg's case doesn't fit anything that the doctors are used to seeing, they are divided on what to do next. They've decided that it is best to move ahead with doing plasmapheresis on Greg in hopes that they can remove an antibody from his blood that is causing AMR even though it doesn't show up on any test that they've done so far. He will receive 4-5 treatments, one every other day starting tomorrow, which means that we are going to be in Fairfax for a while. They aren't sure that this will help but the possible benefits outweigh the risks so we're going ahead with it.
A big development today is that the doctors are now wondering if the cause of all of these symptoms of heart failure isn't actually a problem with the heart but a problem with the kidneys that is causing all the fluid to build up around the heart. His kidneys are functioning very poorly and originally they thought this was caused by the heart. They brought a kidney specialist on to Greg's case to help them figure out what is happening with his kidneys and how it is effecting his heart/ what we need to do. There is talk of possible dialysis if the plasmapheresis and diuretics don't help the kidneys regain their ability to function well.
So we still don't have many answers, but we are feeling better knowing that the kidney doctor is part of Greg's medical team now.
Some prayer requests:
Greg's first plasmapheresis treatment is tomorrow morning. Pray that he tolerates it well and that it cleans out any antibodies that shouldn't be in his blood!
He had a very large catheter inserted into his chest today for the plasmapheresis and it is causing him a great deal of pain and discomfort. He's going to have it in for over a week so please pray for the pain to stop.
Greg is still having difficulty breathing and a lot of pain from all the excess fluid in his body. Please pray for relief from these symptoms!
That the doctors would be able to figure out what is causing the heart-failure symptoms and that there would be solutions to the problems.
I have a severe cold, am having a hard time sleeping, and feel physically lousy on top of the stress of this situation. Please pray for physical healling, rest, and a peace from the Lord that is not dependent on our circumstances.
Paul continues to be the sweetest, most flexible kid in the world. Pray that we would be able to give him consistency, fun, and good moments with his daddy in the midst of all of this. Please also pray that he would sleep past 4:45 am! That would really help my lack of sleep!
Thank you for your prayers!