Discharge Planning Meeting

I had a meeting yesterday at Kaiser. It was the first of our discharge planning meetings. We discussed the next phase for Sara. I was trying to get some discussion as to what we were going to do next with regards to her traech, but it turned into the full-blown all hands meeting. That's cool.

Dr. Hospitalist started off by letting me know what her current condition is. He says she is over the pneumonia and medically stable. His only concern is the occasional low-grade fever and a borderline white cell count. Other than that, she shows nothing else that indicates any lingering illness. He said that her last lung sputum culture did not grow anything except colony bacteria. (colonization of bacteria in the lungs is not uncommon in ventilator-dependent patients - which she was for months.) She is clear of MRSA, Acinetobacter and other agressive, often fatal bacteria. He states that it is ok to start looking at her next level of care, although he does not wish to discharge her immediately.

Ms. Discharge Planner (this is a new on - not the one from Sacto) said she has made contact with 4 possible facilites that would likely accept her. I reminded her that my intent was to bring Sara home after Walnut Creek. Dr. Hospitalist said he would want to understand that I knew what that meant, and why I wanted to, but we'd come back to that. Ms. Discharge Planner continued and said that Rossmoor would accept her back and I nearly came out of my chair. I actually raised my voice and scared the hell out of the 6 other people in the room. "No Way is my daughter going back into that place. 7 days. 7 days is all it took for them to let her go from smiling, breathing easy, bright eyes, hopeful - to pneumonia, shutting down kidneys, borderline sepsis, respiratory distress, and scared for her life. And I was there, every day, fighting them to take care of her, coaching them on what she needed, and they ignored me STILL managed to almost kill her. No way. My daughter is NEVER going back into a facility like that. I promised her that. No Way. Period."

And then I gently apologized. I just couldn't do that to her, or let anybody make me do that to her, again. Not again.

Ms. Discharge Planner continued, stating that she understood that from our conversations, but that she felt it would be remiss on her part if she did not help support me bringing her home, and continue to look other options in case that became not possible for any reason. Ok, I said. I understand that. But Rossmoor will never be on that list... She said there was a place in San Leandro, Healdsburg, and some other place near walnut creek. I told her that we don't live down here, so all those are out. She's been away from home for almost 5 months and medically she is getting better and stronger, but psychosocially she needs to reconnect with her life, her friends, HER support group and community. I didn't like Healdsburg, but if we have to and it is close, we'll go there. I will send her the information for Evergreen in Petaluma, so she can check it out, too.

Ms. Home Care Coordinator popped in now and started going over the MediCAL realities, and stuff, programs. She didn't tell me anything I hadn't already found out, but I think she'll be a real good source for making easier contact with MediCAL program nurses. I like how straightforward she was.

Then they asked me why I was so intent on bring her home - not that there is anything wrong with that, but it will be hard. So I told them..

Rossmoor was a good facility. Everyone who said anything about it said it was good. I went there myself and there was no urine smell, patients weren't yelling for help, it was clean, staff looked happy and attentive to patients. But this good facility was the wrong facility for Sara. What happened to her care aside, it was the wrong environment. You know that nursing homes, skilled nursing facilities, whatever you want to call them, has a specific mission or function in the care cycle. They are there to maintain the body, at the same level, until the point of death. They are not there to help heal, or improve. They do not have the resources or focus to try and improve anybody's condition or outcome. If the body declines they have to send it to a higher level of care, if it gets better it goes home. But, on the whole, it is passive medicine. AND, if you have a patient, such as Sara, who is caught in the quagmire of a diagnosis/prognosis that doesn't afford even acute care any idea how to help her - well, skilled nursing has absolutely NO chance of helping her.

Sara, ON HER OWN, has challenged herself and everyone around her, to give her what she needs to improve. She understands completely that we are all in uncharted territory here. She is young, bright, and actually pretty happy. Dr. Hospitalist said he noticed that too. I said that everyone around her has seen her work to improve. The RTs see her do neck curls after coughing. She's working her own neck herself to try and improve. You stopped PT WITH her and she continues to do it without you. She looks to us, her loved ones, to help her where others will not. And we absolutely do and will continue. She smiles, open and closes her mouth, makes faces at the nurses, moves her head. Make no mistake. Those you look at and see social interaction. I look at that and see both social interaction and her working. I've peeked around the curtain where she couldn't see me, and seen her working her jaw and mouth. She even got her own mouth open, by slowly working it, after months of being in an aspen collar. She worked on her own swallow after I let her watch me do it a couple of times with my mouth partially open, so she could remember and mimic. Now she clears a lot of her own oral secretions.

And then I asked them..."Does this sound to you like somebody who needs to go to a place, where the focus and entire environment is there to maintain the body in its CURRENT state, until the point of death?"

And then they got it... Dr. Hospitalist actually shook my hand and told me he just learned something from me.

I said, listen, I know its going to be hard. But the alternative is clearly not acceptable and is not in HER best interest. She has committed to doing everything she can to get better and she trusts me, not just as her mother, but as the person who is now legally responsible to ensure her wishes are carried out. She trusts me to get her anything she needs. And she knows I will do it. I said I know if it were reversed that she would do the same, regardless.

So, that's why she's coming home. If she can't get rehab in the system, and the help to take herself further still, then we will build whatever is necessary, learn whatever is necessary, do whatever it takes to get it for her. And, at the same time, she will be surrounded by her family, friends, pets - in her own home with her own things on the walls - in the community she grew up in and that has supported her family so dearly since her accident. Its time. And it would be harder NOT to do it now, knowing that.

There was a long moment in the room - I could feel everyone taking it in for themselves. I know on the surface they are seeing a mother fighting for her child, but I know that each of them was internalizing bits and pieces of my argument.

And then I addressed Dr. Hospitalist. So, knowing that she has now worked her way off the ventilator and not getting any pulmonary rehab, what can we actually do to help her while she is still in this environment? Her goal on January 1st was to get off the vent. Now it is to decanulate (get the traecheostomy out and go back to nose/mouth breathing) when next able. He said that after our discussion yesterday he thought about that too and asked a rehab RT to join her care team and work towards that goal. He also ordered her therapy restarted. He also ordered her into the cardiac chair twice a day, and out of her room while in it. He said that the RRT and his team were going to work closely with Sara and I to move in that direction and he figured it would not take long. Their only concern was the level of secretions she has. Then I poiinted out that cuffed traechs normally cause more irritation and trauma than uncuffed, and that increases secretions. They were surprised I knew that, but agreed and said they'd move towards an uncuffed when the felt it was indicated.

Then we ended the meeting and a few people came back to Sara's room with me to meet her and learn how to communicate with her. We showed them how to interpret her blinks, how to ask her questions and just how responsive she really is. Then we showed them how to use the communication board, even spelling out words. Then I told them what her signs of distress are and how to quickly figure out where the distress actually is. She was happy that more people were learning how to communicate with her. Then the RRT and I explained to her the plan of attack, to which she grinned widely (to his delight, too.) and blinked Yes.. I told him that she was letting us know that she's onboard. I asked her if she was just waiting for us to catch up with her, which she answered Yes, and he said out loud when she did.

He left and brought back two other RRTs on his team who will be working with her. He explained the goal and plan in front of her and everyone is onboard. I just watched her. Her eyes were so bright and alive. She was excited. Its so nice to see.

That was the first time since we left Kaiser Sacramento that I saw that kind of sparkle, that excitement of looking forward to something for herself. Somehow in that moment the darkness of the Rossmoor chapter faded away. Her journey is continuing, and she is ready for it.