Wednesday, May 27

It's more of that no news is good news stuff. John is back in the hospital at Emory, but doing okay. He has been feeling okay overall, not much energy and not much appetite, but not any major rhythm problems to speak of. This morning however, he started feeling very badly so we headed to Emory. They went ahead and admitted him and will decide tomorrow whether to send him back home or keep him. He didn't get shocked which is good, but he felt awful. They gave him some medicines and some IV fluids, since he may have been a little bit dehydrated. He feels a lot better tonight, but since he tends to have some pretty big swings from small medicine changes they are monitoring him very closely.

Even the ER doctor who saw him told the transplant doctors that he looked pretty bad, and they are used to seeing some awfully sick folks down there. Our doctors have been great as usual, so we just have to wait and see.

By the way, Nicole got back from Kenya today, she is very tired but it was great and she is looking forward to spending the summer with the Daraja African Children's Choir and traveling around the southeast. We're glad to have her back in the US safe and sound.

I'll try to do better at keeping you all posted!

Monday, May 11, 2009

Hope all of you mothers out there had a nice Mother's Day, we were blessed to have my family come over to see us at Zach's house in Oxford for a nice visit.

John is feeling about the same, but seems to have more of those bad days than good lately. They replaced his picc line last week, and that went very smoothly which was great. So far it is working well, and we haven't had any alarms from his pump which has also been great. We go back to the doctor on Wednesday this week, so maybe there will be a plan.

Things are a bit crazy with schedules lately, I will have to go in to work more since it is the end of the school year soon and there is a lot to do, Nicole is getting ready to go to Kenya for a couple of weeks and then will be gone all summer traveling with the Daraja African Children's Choir, and Trevor is getting ready for a 5 week debate camp in Michigan this summer. So, we want to thank all of you who are volunteering to sit with John and help keep an eye on him while I am trying to take care of the other things. Josh, Zach and Jen have all been great about helping out and putting up with us and our stuff everywhere.

I'll be better about posting if information changes. We haven't had to go to the emergency room for several weeks now, so that is always good news, but we sure do wish this whole thing could get moving along. John has been unbelievably patient and good natured about all of this, I would have been so mean by now that I can't even imagine it. So until the next time, keep those prayers coming and I'll keep you informed.

Friday, May 1

Hey all, just another update. We went to the doctor on Thursday, and things are pretty much the same. We have been experiencing some problems with John's picc line, which is an IV line that enters in his arm and snakes up into one of the large blood vessels near his heart. It has 2 ports that hang out, one of which is used for his IV milrinone which is the main heart medicine he takes, and the other port is supposed to be used to be able to draw blood. The line has probably shifted, and they are no longer able to get blood out of it, and when I flush it with saline there is a lot of resistance. We have also been getting a lot of alarms sounding with the pump he wears, probably due to the picc line having moved a little. It was originally put in on Halloween, so it is great that it has gone this long without any major issues. (I'm pretty protective about it, since infections are common and can be a huge issue, so I harass the nurses pretty good about cleanliness, etc. whenever they mess with it). The plan is to replace it next Wednesday at Emory, should be pretty routine outpatient surgery. However, they have to be careful of all of the other extra stuff he has in there, meaning the pacemaker/defibrillator and all of the wires that go along with that, so I guess nothing is routine.

We go back to the doctor in 2 weeks, and they will probably put him back into the hospital in about a month and re-do the right heart cath to check his pressures going to the lungs again. The good thing about that is it puts him back to 1A on the list, but it is a big deal to thread those tubes into his neck and then through his heart and out the pulmonary artery that leads to his lungs. When we get to that procedure he stays in the CCU, hooked up to lots of machines and no real mobility, so that isn't too much fun.

Other than that he is feeling about the same, his strength is getting better but he still doesn't have much appetite and has lost about 8 pounds in the last 2 weeks. He can't afford to lose too much!

Here's hoping for a quiet Friday, no visits to the ER for us, and a relaxing weekend for all of you.