Waiting Hours...

I'm a little less upset with the doctor I wrote about earlier. He made a point to speak to me when I came back in and he let me know everything that was going on. As long as he keeps me informed, I'm okay, although I still feel a little put off by not getting to be there for rounds.

I guess you could say that the team of doctors is working on a new game plan right now. They did another bronchoscopy this morning and informed me that the bleeding in her lungs is worse than it was last week when they did the first one. They also took some cultures, but they can't tell the results of those until later on. They have said before that they believe the condition of the lungs is driving all of her other problems and that the TTP is what likely created the bleeding in the lungs. 

The doctors are thinking about trying some special form of vitamin K, which they sometimes give to hemophiliacs to help form blood clots. They worry that the blood clots might be created where they wouldn't be advantageous (or perhaps make things worse), but now that they know that the lungs are worsening, they want to be more aggressive because it has become obvious that the treatments up to this point have not helped. They are also starting dialysis sometime this afternoon to remove some toxins from her blood that her kidneys aren't removing, and they are going to stop plasmapheresis for at least a day because it doesn't appear to be helping her.

Jenni looks peaceful. She is heavily sedated and has had quite a bit of pain medicine. Now I'm just waiting for the doctor to talk to me about vitamin K and for visiting hours to begin again so that I can go sit with her.

New medication

Dr. Chute was just in a few minutes ago and is going to start some new medication that will hopefully turn things around for Jenni. They will be giving her Amicar for the bleeding in her lungs and Enbrel for the Graft vs. Host disease. The new drugs will be given every six hours. They have just finished giving her the plasmapheresis. Dr. Chute has decided to move her back to ICU to better monitor her breathing.

Introduction

Jenni has now been at Duke Medical Center for eight days. We don't have too much information on exactly what has been happening with her health, but we do know that things went downhill fast the first weekend of March and have pretty much stabilized since we arrived. We do know the following:

• She has graft vs. host disease in her eyes and mouth (not the primary concern, but frustrating for her).
• She has fluid in her lungs, and a bronchoscopy showed evidence that there had been bleeding in the lungs as well (DAH). They are treating the fluid with lasix (which will also help her kidneys, from what I understand) and the rest with steroids.
• She has CMV, which appears to be the main thing affecting her lungs.
  
• She has TTP (thrombotic thrombocytopenic purpura), which is what the focus of the treatments have been on. They're treating this with plasmapheresis. The doctors seem to think that this is the driving factor behind the other issues.
  
• Her blood sugar is bouncing all over the place. This morning it was 96 (normal range) but it has been as high as 500+. They have a bag of IV insulin running at all times.
• She has extreme joint pain in her legs that no one seems to understand, but that they have treated with diloted (hope I spelled that correctly). It might be because of the increased steroids, but it might also be due to fluid buildup from her poor kidney functions.

In any case, there are so many things going wrong right now that I have probably forgotten something, so please forgive me if I have. I'm beginning this project to help fund Jenni's caregivers (short term goal) and cover any other medical expenses that arise due to her current condition (long term goal). On this site, you'll mainly find updates on Jenni's condition, but you may also see the occasional post about Adsense or my goal of making money online while Jenni is out on disability and I'm missing so much work.

Hopefully we'll be able to generate enough traffic to help pay the bills. Notice the emphasis on traffic. Although there is an option to donate at the bottom of the page, all you need to do is visit the page to help us out financially (thanks to Adsense). Thanks for everyone's support and prayers!