Good news!

I tried sending this update out yesterday but it didn't go through for some reason so here it is:

I am very relieved to tell you that the only problem with our car was a dead battery, which has now been replaced! And Paul woke up without the rash so his pediatrician (over the phone) said to just keep watching him for any other symptoms. I am hoping that the rash was just another bug bite that happened to be in the same spot.

After two days of the diuretics being ineffective and Grey putting on water weight each day, the dose he received yesterday actually took some of the excess fluid off! Now we are just waiting to see how it affected the kidneys and if it is the right dose go keep him stable at home. Hopefully we can leave today or tomorrow!

Thanks for continuing to pray!

Elise

We are actually home right now!  Totally exhausted and a bit overwhelmed, but home!  Please pray for us this week as we monitor Greg's symptoms carefully and start catching up on everything we missed over the last couple weeks.  Greg still feels wiped out and has extra fluids on board that are making him uncomfortable.  Paul's cold that he's had for a week now is lingering (and sounding worse), and I am so tired.  Pray for energy to tackle the week!

Thank you so much,

Elise

When it rains...

Well, we are still here.  The heart catherization results threw the doctors for a loop.  They thought it would show that they had taken too much fluid off of Greg (which would explain why his kidneys were still not working well) but they discovered that Greg still had high heart pressures and probably an extra 10lbs of fluid still on board.  They took him off of diuretics for 24 hours and his kidney numbers improved so now they are fairly confident that the diuretics were hurting his kidneys.  But during that time, he put on an extra 2.5lbs of fluid.

To spare his kidneys, they are going to leave the extra fluid on for now.  They feel that the heart is working fairly well, Greg feels much better, and the kidney function is acceptable.  If they were to take more fluid off (which would make Greg feel better and the heart work even better), the kidneys would suffer too much.  So now they need to figure out the right diuretic dose that will keep Greg from putting on more fluid and not negatively affect his kidneys.  It is possible that Greg could be discharged tomorrow but we aren't sure.

Tonight during Paul's bath, Greg's mom and I noticed that Paul has a rash behind his ear where the tick was removed.  I called our pediatrician and she wants me to take Paul back to the Urgent Care clinic tomorrow morning for them to look at the rash and see if they think it is a Lyme's rash and if so, to get him started on antibiotics.

Then later tonight, I went out to pick up some groceries and when I got back to the car, it wouldn't start.  AAA came and jumped it for me so I was able to drive back to our friends' house, but now it won't start again.  So in the morning I have to get the battery replaced.

We've now been here for 14 days and I am totally depleted - and having Paul develop a rash and our car not work just feels like too much right now.  Thankfully I have good friends and family here who are being so supportive and helping me through this.  But if you could please pray for renewed energy to face all these challenges, I would really appreciate it.  And please pray for the doctors as they decide what would be best for Greg.

Thank you,

Elise

Going Home Soon!

Hi Friends,

It is amazing how much better Greg is doing in just 2 weeks.  I feel a little shocked by his turn-around and how much better he feels.  This situation has truly become a best-case scenario when compared to all of the really scary possibilities we were facing.

At this point, Greg has lost nearly 30lbs of fluid which the doctors believe just slowly accumulated over time.  As you can imagine, he feel so much better physically (even though he is still a little weak from being so sick and spending so much time in bed at the hospital)! 

They've determined that Greg has chronic diastolic heart failure.  His heart muscle doesn't relax as much as it should, which means that it can't properly pump blood through it, making Greg suscepitble to having extra fluid in his body (which then causes heart failure and in Greg's case, kidney failure).  Over the past few days, the doctors have been trying to figure out the right balance between heart function, kidney function, diuretics vs. extra water in his body, and how he feels.  Its not possible for all of these things to be 100% and they are prepared to let the kidneys not function as well (due to the effects of the diuretics he needs) in order to allow his heart to get rid of the fluid it needs to to pump properly.  Obviously, this is all in laymans terms and I barely understand it!  But I do understand that there are a bunch of factors that they are trying to balance to give Greg the best quality of life and heart/kidney function that he can have.

Hopefully, he will be having a right heart catherization tomorrow morning which will tell the doctors how much extra fluid he still has in his body and how it is effecting his heart.  Once we have that information, they can decide what doses of different medications he needs and if he's ready to go home or not.  This will also help them (and us) monitor his health in the future so that we don't get in another situation where he is suddenly in heart and kidney failure and we didn't see it coming.    

We are REALLY hoping that we can go home tomorrow!  But more than that, we just want to make sure that Greg is healthy enough and they have everything figured out (especially since we live 4 hours away from the hospital and can't just pop-in to recallibrate things!).  At the same time, I feel a little nervous about going home and monitoring things on our own, so please pray for us as we learn to watch Greg more carefully for signs that the heart failure is worsening.

Thank you for all of your support, encouragement and prayers!  We are so thankful to be sharing good news - your prayers for Greg have been answered!

Love,

Elise

Quick Update

Hi Friends,

Over the past two days, Greg's kidney function has started declining again.  The doctors think that this is probably the side effect of his transplant medications being at a much too-high level in his body (now that the extra water is coming off they are being absorbed much better and the levels of one medication is triple what it should be).  Although they made drastic changes to his medications yesterday, his kidneys continued to get worse today.

The doctors have explained that there are so many factors in Greg's treatment that can be causing the kidney issue and it might take some time to isolate the cause.  Greg's heart catherization may be moved up to tomorrow afternoon if his kidneys don't improve overnight, in order for the doctors to have more information to work with.

Please pray that the doctors can figure this out quickly and that Greg's kidney function improves.  We are so eager to get home and really hope that this doesn't add more days onto his hospital stay.

A surprise source of "adventure" today was finding a tick on Paul while he was visiting Greg!  Greg's nurse Nour, who is awesome, was so sweet and gathered a bunch of other nurses to help us figure out what to do.  We ended up taking Paul to an urgent care clinic to have the tick removed and he handled it like a champ.  Now we just need to watch for any signs of Lymes Disease over the next month since this area has really high rates of Lymes.  

Thank you for your continued prayers!

Answers!

We are finally getting some answers!

In the past two days he has lost over 16lbs of fluid, and in all he has lost over 20lbs of fluid!  With this excess fluid out of his body, his kidney function continues to improve daily, and all of the symptoms of heart failure that he was initially hospitalized for are lessening considerably.  There is still too much excess fluid in his body and much of the focus right now is continuing to get the fluid off.

We had a very helpful conversation with a couple of doctors today and while we don't have all of the answers, we have much more information than we did earlier.

At this point, the doctors are strongly leaning away from a diagnosis of rejection, even though we are still waiting on the 2nd and 3rd AMR test results to come back.  It is still possible that either test will be positive, or that the plasmapheresis will find an antibody that they cannot test for, but the doctors do not feel like this is likely.

The most likely cause of all of this is Cardiorenal Syndrome, which essentially means that dysfuntion in his heart is what caused his kidneys to fail.  Due to a lot of factors that the doctor explained about Greg's transplanted heart, and the condition that caused his old heart to fail, Greg's heart has trouble maintaining a proper fluid balance in his body.  What likely happened was that over time, fluid accumulated around his heart, effecting its ability to pump blood to other organs, including the kidney and for whatever reason, last week it got to the tipping point and he went into heart and kidney failure.

Before Greg leaves the hospital, the doctors' goal is to remove all the excess fluid so that they can get baseline information to use to keep this fluid accumulation problem in check in the future, preventing a scenario like this one from happening again.  They anticipate that we will be here at least until Monday as they work on getting the fluid off, weaning Greg off IV diuretics and other IV medications, finishing plasmapheresis, and doing another right heart catherization to measure his heart function when he is "dry".  

We are praying that all of these procedures and tests go as smoothly as the doctor outlined them today, and that Greg will be able to go home next week!  We are hopeful that the information they have learned through this awful ordeal will lead to much better data-driven care of his heart in the future.

Please continue praying for us - we are all tired and very much want to be home!  And please pray for Greg as he continues to feel poorly from all of the procedures and medications he is on, as well as the effects of the excess fluid that is still causing problems in his kidneys.  Please pray that the diuretics would do their job and that he would feel better and better as the week goes on.

We are so grateful for how much better Greg is doing overall and the way that his kidneys have responded so positively to the diuretics!  It is a huge relief to see him doing so much better than he was last week!  Over the past two days he's been able to walk a short distance in the halls, and play with Paul a little bit during his visits.  It is so good to see him getting out of bed and breathing easier!

Thank you for your prayers!

Kidney function improving!

Today is the first time that we've felt like things are starting to go in a positive direction!

The big news is that his kidney function is improving, even though the diuretic he's on is known to hurt kidneys. He also lost 5lb of fluid overnight which is so important in improving his heart and kidney function.

There have been some difficult moments today, but there are other times when he's been much more alert and more himself than he has been in over a week. We are very thankful for this progress even though we know there is still a long way to go to before we have answers and he can go home. 

He had his first session of plasmapheresis today and he tolerated it well.  I'm looking forward to talking with the doctors tomorrow - especially the kidney doctor.

Please pray for:

- The diuretics to keep removing excess fluid from Greg's body.

- His kidney function to continue improving.

- His oxygen saturation to improve, along with his heart function.

- Answers to why he is experiencing heart failure symptoms - is it AMR or his kidneys that are causing it?

- For my sinus infection to clear up (I was able to be seen by a doctor today and am hoping my antibiotic does the trick!).

Thank you for your continued prayers! God is answering them! 

Pray for Kidneys

Hi Friends,

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!

Love,

Elise