Ups and Downs and not moving yet and to who knows where...

I called the discharge planners this morning - looking forward to hearing what time she was moving - and got something completely different.

There are problems...with Sara...she says. RTs saying that they are concerned about her condition changing and she's starting to require more and more suctioning. (A new pneumonia perhaps - from aspiration. She's been left alone a lot and she aspirated fluid from her traech bag..again...) She says that the nurses were complaining about how much she needed, etc...Vallejo probably won't accept her now...condition...

I felt it welling up inside me as I listened to her - fear, anger, resolve. And I started to respond, quietly at first, trying to calm myself and hold back, but then the salty taste started in my mouth and the tears started.

No, ma'am. This is not ok. This is exactly why the doctors who have been regular with her wanted to keep her in ICU. The level of care at 3N is below what she needs and below what you would allow me to provide her at home. Every time she's gone to 3N she's ended up aspirating and ending up sick and back in ICU. I was assured she wouldn't have to go "back up on the floor" by Dr. Hospitalist 1 and Dr. Hospitalist 2, as they also felt she needed the higher level of care to maintain her health. But, no, Kaiser Vallejo wanted her to go to the floor, even though she was stable, no fever, little suctioning, and ready to move...they wanted her to go to the floor "just to see". Well, now we all see. See that she doesn't get enough attention and little precautions - There are 30 people in and out of her room, another family and everything they walk in with, and now my daughter is getting sick.

I told her that this is not ok. If Vallejo won't accept her unless she's been on the floor, then screw Vallejo. Send her back to ICU and let her get the level of care and attention she needs and closer to the level we will provide. Let her get healthy again and train us from there and then she goes home. But don't put her anywhere to "looksie" and let her get sick. Pneumonia WILL kill her. Eventually she will get a case of it we can't fix and it will kill her. It is only a matter of time. And each time she gets it she is one step closer, and I cannot have that happening over and over for burocracy sake.

She understood, having been our discharge planner for most of Sara's stay in Walnut Creek. She agreed with my assessment and feeling, but felt like her hands were tied by Vallejo. So, I asked to talk to them. She obliged and gave me their number and the people who have been handling her intake there.

So, I called Vallejo and spoke with Intake Coordinator 1. I introduced myself and she immediately knew I was Sara's mom. So I told her what was going on, level of care, suctioning, stable, what happens when she goes from 1:2 nursing to 1:6 and how that is lower than the level of care they will allow me to provide her once home. Ridiculous that they require her to go to 3N in order to go there. Its just family training. They don't want her for rehab and we know that, so just let us get her there, trained, equipment and be on our way. She assured me that it wasn't that they didn't want her - on the contrary. They want to meet her, help if they can, and have been keeping up with her progress for quite a while.

She explained that Intake Coordinator 2 has been very much involved with getting her there. She apparently keeps the team up on her status daily and has for weeks. They just want to be sure what they are getting into and able to provide for her adequately with their nursing levels. Dr. Rehab and Dr. Hospitalist have been talking often about her case and trying to work within the system... Encouraged me to talk to Dr. Hospitalist, as he and Dr. Rehab might have the ability to get on the same page regarding her.

I had to leave my office and go to the conference room, where I completely fell apart. It doesn't happen often, but I can't handle everything everyday all the time and keep my composure. I just swallow it and hold it down because I have nowhere else to put it. My relationship seems to be in the toilet and he's never around or talking to me - has left me to handle this all on my own under the guise of "staying out of the way". I'm not one to have girlfriends or many close friends in the first place. Probably from growing up military. I'd rather put my energies towards my primary relationship and my kids. So when I fall apart, and he's not there to catch me, I fall alone and hard. And I did. I stood there, holding myself, holding back my muffled crying, fear, frustration, sadness and anger choked behind my hand and closed eyes. And I held on until it passed, like a freight train.

Then I called Dr. Hospitalist. We have had three discharge planning conferences together so far. So, he knows that our goal is to bring her home. He's a very conservative, cautious doctor and said that he's not sure when she'll come home now.

I lost it.

No fucking way. No, sir. She is coming home. She is coming home before the end of the month whether she goes to Vallejo or not. She's coming home because she doesn't deserve to have her life put at risk over and over because of policy and bureacracy. She's coming home because she doesn't deserve this. She didn't need to have this stroke. They could have caught it in time if they had done the right tests for certain trauma injuries like hers. (I am referring to the first hospital - not UCDavis or any of the Kaisers). She isn't some dumb kid who was out drinking and driving and flipped her car and this is Karma for shit done. She was supposed to wake up the next morning, but they didn't do all the tests, and they missed it on the ones they did. So, No Sir. She's not going to stay in the hospital. Medicine can't help her anymore and all we are doing is shuffling her from one room to the next. She deserves a life, and is asking for hers back. So, No. She is coming home by the end of the month with or without the blessing of Kaiser, with or without Vallejo taking her, that's it. She deserves better than this now and has asked me for it and I said yes. So, yes it is. Do whatever you have to on your end to make that happen and be in control of the process or find someone who is able to - I don't care who.

He listened and understood, agreed where he could. He understands that she needs to go home, for many more reasons than she needs to stay for. He explained that sometimes his hands are tied, but he was going to see what else he could do. And I told him that I was going to hold him responsible to do so. Not whoever happens to be the doctor on shift that day, but him. I let him go to handle that, and I gathered myself and called my daughter.

I talked to Sara and she is requiring more suction. It was water going down her tube when they moved her. She doesn't feel like she's getting sick yet, but that she does need the extra suction. I told her about what is going on between Walnut Creek and Vallejo, and about my conversations with each of the players. I asked her if she and I were still on the same page and she said yes. I asked her if Mom was doing right by her and her wishes and she said Yes. So I told her OK, I'll keep going. You keep breathing deep, call the nurses for suction when you need it, keep those glasses on so you can communicate and call for help, and we will get the rest of the way. Then she said "Mom", which she knows I get such a warm kick out of. Its become her easy way of saying that she loves me. Then she said it again and I smiled. I could almost feel her hug me and I told her that I loved her too and would see her in a few hours.