Palliative Care

I will try to get as much of this right as I can. At this point maybe blogging what we are going through will help someone else who will have to go through this terrible situation in the future.

The Palliative care doctor came around a few minutes ago. He said he spoke to Dr. Haddad and the transplant doctors who said there is nothing more they can do for Maddy at this point. His name is Dr. Tuch and he said his job is to make sure Maddy's pain is managed and help coordinate her decisions from her on out. He asked her to explain about her current pain and tell him what the transplant doctors have told her about her prognosis. He also asked a lot of questions about our home situation and how she thinks she will be able to manage in the comfort of her own home. The goal is to get her out of the hospital if she would rather be at home but he said if she wants to be here thats ok too. She prefers home so the next part of the discussion was how much help she has at home. I voiced my concerns about leaving her alone while I worked if she was on high doses of pain meds. Maddy agreed that she is getting weaker and may need  little more help when I'm not around.

Most of the conversation revolved around Maddy's desire to continue fighting. She wants to continue treatment in the hopes of getting the antibodies under control and the rejection to stop. Dr. Tuch said that she can keep fighting but he wants to make sure she isn't going though a lot of unnecessary pain in the process. He also said it's probably time to consider the possibility that her condition will not improve and that we need a plan to help her be as happy as she can be for as long as she has. He specifically asked her what she wants to do with the time she has left. She said just not be in pain.

After the longest and hardest conversation in my life we cane to a few conclusions. Dr. Tuch is working with the transplant team to adjust her pain medications. He took her off the Ultram because it wasn't helping. He changed her Norco from every 6 hours to every 4 hours as needed. He will also put her on a long acting form of morphine at night so she can get through a whole night of sleep without any pain waking her up. He hopes this will allow her to manage the pain so that she can be up and somewhat active during the day and get a good night rest. He is also calling the Hospice Care team to see what can be done to get Maddy home and get her cared for while she is on these higher dose pain medications. He mentioned that Hospice doesn't usually continue any of the anti-rejection treatments that she is currently on. But he understands that it is important for her to keep fighting so he will work with them to make sure she will still get her anti-rejection meds and if the transplant docs think the Antibiotics and steroids will help then we can continue those as well. He promised to come back later this afternoon to let us know whats up with Hospice.

Maddy was up eating a yogurt smoothie for breakfast when Dr. Tuch came in and we could see that her pain was increasing as the conversation progressed. At the end of our discussion he went right to the nurse to make the medication changes and brought her in to give Maddy her Norco. Shortly after that Maddy asked me if she could put her mask back on and take a nap so she is sleeping again. While the doctor was out Maddy and I had a bit of a conversation about everything thats going on. She was upset that I was upset by all of this. I assured her that I am only upset because she is hurting and that I do not want to see her hurt. I also let her know that I did't think she was giving up and that she shouldn't worry about me. I don't want her to hold on if it means she will be miserable. Especially if none of this pain she is enduring is going to help get her better. So we are going to do our best to make sure she is pain free and can enjoy as much of the time she has left.