It looks like someone posted that last message accidentally on the blog - not sure how that happened! Possibly by replying-all to an email update I sent out? Please disregard that message (and if you get our blog updates via email - please don't reply to them) and I'm sorry your inboxes are getting clogged up!
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!
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!
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.
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!
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.
Would you like to help with Greg and Elise's medical expenses?
Greg and Elise work for Campus Crusade for Christ, a 501(c)3 Christian mission organization. If you would like to make a donation to Campus Crusade to help them pay for their enormous medical expenses you could do so by clicking here.
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