Saturday, January 5, 2013

Advocating

Thursday Jan 4 and Friday Jan 5 2013

So, for some unknown (to me or the nurses) reason, the DRs had decided that James had to go to Brackenridge for his facial surgery. It was set for next Wednesday with the plastic surgeons who had been at Seton all week watching over his care.

Now, initially this just sounded inconvenient. Seton is moments from home, the baby, and our support system. Seton is a brand new facility with top-of-the-line everything- new equipment, sweeping architecture, big rooms, free coffee. Brackenridge is an hour south in Austin. It's a teaching hospital full of overworked, inexperienced (my mind) residents. It's old, out-of-date and cramped. Everything is on lockdown (because homeless Austinites want to use the bathrooms?) and they had a pay parking garage. People told me that Brackenridge was the best teaching hospital in the area, and my thought was, great for medical students, but James is a patient. They had told us some DR there didn't have privileges at Seton. We were like, "Can't you get temporary privileges?"

Friday they tried to move James to Brackenridge in a transport ambulance. Watching this go down (or NOT go down) was nerve-wracking.

First they have me sign papers authorizing his transport. Then they orchestrate an empty room at Brackenridge and the timing of the transport. Finally the team just shows up.

They move James from his hospital bed to their teeny tiny narrow ambulance roll-y stretcher. The way they do this is nurses and the transport team grab the strappy handles of a fabric stretcher that is under his bedding, under him. They "one-two-THREE!" shift him. Then they hook James up to all their equipment. They wait to make sure he is all set.

They wait, they tell me, so that they know he'll tolerate their machinery. They tell me that hospital ventilator is like a Cadillac, and their ambulance ventilator is a Volkswagon. I think they meant the old VW bug.

For some reason, I leave. Oh I remember, Joseph was brought to me, to nurse. The kid refuses to take a bottle. I go down to the big spacious lobby with all its benches and armchairs to feed him. A little bit later, I see the Acadian ambulance go around the drive and I think, there he goes.


But when I get back upstairs, my handler says he's gone, but not down the drive to Brackenridge. They've taken him down to get a CT scan.

What?!

Evidently they started to roll James down the ICU hallway on the way to the elevators, and his blood oxygen plummeted to the 60's and they raced all panicky back to his room and put him back on the Cadillac respirator, where he resumed the desired 100% O2 level. (I asked, and they said that you and I, healthy, breathing normal room air, are running our blood oxygen at 95-100%.) So the transfer team leaves and the transfer is cancelled. They fear that when they "1-2-3ed" him, they dislodged a lung clot and that's what caused the O2 to fall. So they took him to CT to see.

But it was clear- no clot.

So, they do all the finangling again. A new Brackenridge room gets reserved, a new ambulance team is called.

The new team comes. They put James on their narrow little bed. They take him off. They "One, two, three!" him back to the roll-y bed. They hook him up. I tell them how he did not like the other ventilator. They tell me the car analogy. I tell them he's always had champagne taste on a beer budget. They laugh.

They switch ventilators, from the Seton one to their transport one. His O2 plummets and they switch him back. The laughter dies away and they're all, hmm.

They check their O2 hose. They switch ventilators. His O2 plummets and they switch him back.

They check their O2 tank. They switch ventilators. His O2 plummets and they switch him back.

They check their pressure output. They switch ventilators. His O2 plummets and they switch him back.

They check their battery charge. They switch ventilators. His O2 plummets and they switch him back.

They check their other crap and every time they switch ventilators, his O2 plummets and they switch him back. I am getting very anxious. They are seeing liability all over it. Did I mention it is rainy, dark, and Friday night rush hour?! They say this has never happened, both on this equipment or in their careers. They say that patients don't like their ventilators, but they adjust and do fine. They discuss going to the NICU and getting an O2 sensor to see if the machine is actually putting out the amount of O2 it says it is. I remind them this happened on the other team's equipment too.

Some lady in charge, maybe the floor nurse, is on the phone with the trauma DR. (he is the big "umbrella" DR who refers James to specialists and looks at him as a whole person (I hope) instead of as an arm, an eye, or whatever the DR's specialty is). I hear her, talking into the phone, harried and quick. She's all, "let's send our ventilator in their box with our nurse." Then the DR suggests bagging him to Brackenridge (bagging is when a small tube to an O2 tank is hooked up to an inflated bag thing and they press the air into the patient. Super low-tech ventilator. Like a bicycle if we go with the car analogy).


The ambulance transport team says they will quit their jobs before they bag a ventilator patient 30 or 40 minutes in the rain on a Friday night. The nurses tell me, when the room is empty, that they don't know why he has to transfer at all, they say no one ever transfers from this Seton, that it is a trauma center and can handle anything.

I am beginning to freak out, silently, in my head. Why are they rushing?! What is the hurry, if surgery is scheduled for Wednesday?! His wreck was on a damp evening. This is a damp evening. They say the word "Starflight" and I am like "there is something fishy going on here, why is there such a hurry?!"

Suddenly all the frenetic energy dissipates and calm is restored. They are not transporting him. They will try again tomorrow, they say.

My prayer request Friday night was
Tracy is a “rule follower” and feeling such a tension that there may be things she needs to “fight” for on behalf of her husband that she doesn’t even know about – insurance, hospital location, etc. Please pray she will have the wisdom and ability to be assertive at the right times.
Saturday comes. Let's recap: Monday the 31st I got no sleep. The afternoon of New Year's day I slept 2 hours. That night I slept 2 hours again. Then the evening of January 2nd I slept 4 hours at a friend's house. Thursday night I only slept 2 hours. Friday I discover Tylenol PM and sleep 7 hours straight. That would mean that since I woke up on New Year's Eve, about 120 hours ago, I have only slept 17 hours.

I truly have been carried by the Holy Spirit to be (mostly) calm and coherent (but definitely not keeping thoughts in mind for more than a second- literally- if I (or my handler) doesn't write it down, I DO NOT remember.). Also, I haven't felt tired except after they tried to wake James up on the 3rd, which was super stressful and exhausting.

All that intro is to say, I think it was my lack of rest and my inability to keep a thought that made this go down like it did.

Saturday morning everyone is expressing their utter confusion about last night's failed transfer. No one understands why exactly he's being sent to Brackenridge. No one knows why he didn't tolerate two different ventilators that everyone else seems to do fine on. The DR says they will get the ball rolling this morning to transport him again. I ask many questions about why, exactly, he has to go to Brackenridge at all. There is not a real clear answer- It seems that the general assumption is a DR privileges issue.

I ask why we can't just wait for Monday and ask some paper-pushers how to get temporary privileges for this DR so James won't have to move. I point out that he's had his body cut into half a dozen times in as many days since his traumatic wreck, and he needs the weekend to rest. The DR says that if James doesn't tolerate the ventilator again, they will look into administrative maneuvering on Monday.

I start calling my prayer warriors and requesting a very specific prayer request: that James fail all the attempts to transport him. I tell the saga of the failed transports, I describe the strange frenzy, I reiterate that all the staff seems confused about 1. why he has to move and 2. why hurry when the surgery is scheduled for 4 days from now?? I tell them that 60% O2 for a few seconds doesn't hurt James. I tell them I judge that he needs to rest and recover a little. I say that I'm worried that if he does fail the attempt to transport, they might trump me and Starflight him anyway.

When say these things to my MIL, to my step-MIL, to my friend at RRHOME, to my friend at church, to the nurses, suddenly I begin to hear myself.

What??

Did I just hear myself? I'm praying that my husband fails a transfer?!

So I say to myself, I don't have to sign for the Starflight. I just don't sign for Starflight! but then I hear myself, and I'm all, I will trump myself and just not sign for the ambulance transfer attempt either! Ha! Take that!!

And I am the one always saying, "You hire a DR. He's working for you. If you don't like him, get a new one. You're in charge of the relationship." But when it comes down to it, they know more than you about what's going on with your condition and what needs to happen to best care for you. But, they also have their biases, about costs and privileges and protocols and drama that the patient and family don't know about. I don't know if James HAS to go today, I don't know WHY he has to go, but I had to take the chance and demand some satisfactory answers before they moved him, especially if he wasn't liking the machine. Since they couldn't give me good answers and since the surgery wasn't until Wednesday, I figured I could tell them no. Maybe if they really fought me I could get a better grip on the whys.


So I talk a little with the nurse. She is encouraging, and so I practice on her. I say all my reasons, and I say that I don't want to attempt to transport James at all today.

Stunningly to me, she nods her head yes and says "I wouldn't let them transport my husband today, if it was me."

I suddenly just open up and tell her all my concerns and suspicions about protocol and timing and privileges. She nods and says it's not a big deal and that we'll just have to try to figure out some paperwork or real reasons on Monday morning when the paper pushers get to work.

I am surprised how easy it was to say, and so I say it again to the DR. No biggie, let's figure it out Monday. 


It was all very anti-climactic and instead of feeling victorious as James' hard-working advocate, I felt deflated.

But James' stepmom and his aunt were really proud of me.

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