Greg's mom sent an email update to a group of friends this morning that I decided to post on the blog. Yesterday was an extremely difficult day and her email explains what happened. I've added a short update at the bottom as well.
Email from Greg's mother:
I'm on your "prayer doorstep" again. The past two days have been extremely difficult for Greg due to an almost 25 pound weight gain in the past week. Yesterday, his weight was up to 242# and he simply can't breathe. I've spoken to him at lunch time the past two days and he has been having difficulty even talking because he is so short of breath. He has been wearing oxygen continuously, but the "burden" of all this fluid in his abdomen is making him feel like he just can't get a breath. As I last explained, they now know that they have to keep an uncomfortable amount of fluid on him, for the good of his kidneys and other organs, but his heart status changes so quickly and often that it's difficult to stay on that fine line of what's best/ what's tolerable. As of last evening, the doctors have decided that they want to take 15# pounds off over one week. They believe that a slow adjustment to his fluid status is best so as to not place his kidneys in danger. They've adjusted his diuretics toward that goal and now Greg just has to survive these days of transition.
To make matters worse, he has been experiencing really severe headaches from one of the meds used to increase his cardiac output and as a result, they've had to stop that medication. I don't know how much of an effect that will have on the overall picture. Yesterday's nursing care sounded like it was about the worst that he has had during this admission and it came at a really tough time as well. Thankfully, a special nurse, Lia, came and offered reassurance at a necessary time.
Please pray for easy breathing today and for good cardiac output that will carry some of this fluid away. Please pray for peace, comfort and strength for both Greg and Elise... it's a tough, tough time. And if you'd pray for us too I'd appreciate it -- it's so very hard to not be near him to offer comfort and to be completely helpless to "fix" anything. It's just another one of those times that I realize that we are completely powerless over anything that really matters in this life - we continue to trust God for Greg's preservation and for the perfect heart to hopefully come soon, but ultimately within His perfect timing.
With love and true appreciation,
Update from Elise:
We are hopeful that Greg's excess fluid will be coming off of him soon. The doctors have restarted his booster diuretic which has been effective in the past. Greg will get his second dose this morning, so hopefully by early afternoon he'll have some relief from the fluid and be able to breathe easier.
Today is the first time since he left the CCU on Friday that he hasn't put on 3-4lbs of water overnight. He's maintained his weight from yesterday - and we're praying that by tomorrow morning he'll be down a few pounds. As his mom mentioned, the doctors did discontinue the medication that was causing his terrible headaches. He's been on a strong pain killer since yesterday afternoon that is keeping the headaches in check until the drug is completely out of his system. Greg is still on oxygen continually and it makes a significant difference in his ability to breathe.
The care that Greg received yesterday was truly atrocious. I spent a significant portion of yesterday morning calling the heart transplant clinic and the nurses station on Greg's floor trying to get someone in the room to care for him. When I got to the hospital in the early afternoon I got to experience first hand how negligent his nurse was - and also had the chance to make it clear to her that it wasn't acceptable. Greg simply was in too much pain to be able to make phone calls or walk to the nurses station to complain to her superiors. We are so grateful for Lia, one of the nurses on the floor who saw the situation and kept checking in on Greg even though he wasn't her patient.
Greg had a pretty fitful night due to breathing issues but is now sleeping soundly. Hopefully this will continue!
One bright spot yesterday afternoon was a HUGE stack of cards and packages that Greg received. The 2 women who delivered the mail asked for Greg's autograph because they thought he must be a celebrity to get so much mail! He explained that no, he isn't a celebrity, he just has an incredible group of people behind him! It took about 3 hours to go through the mail. I read him the cards and opened the packages for him - and he really enjoyed it. Thank you for taking both of our minds off of the situation and for blessing us with a good ending to an awful day!