Still In Templeton/Tracheostomy Tomorrow

Well, after conflicting stories and mixed up info, it turns out the surgeon in Stanford said yes ... then no. No reason offered. Now waiting to hear if UCSF will do the stint procedure. Dr. encouraged us to research other places in CA and Karen has done so beautifully and I've passed the info on to the doctor in case SF says no, too. UCSD looks awfully good, and we have a lead on a special doctor at UCLA/Santa Monica.

I was horrified to come back to the hospital and find Michael wide-eyed and wide-awake while tubed. I'd been assured they would keep him out. Family has concerns about all this sedation and its effect. Me, too. But they switched him to a better drug that Karen and I researched that has a 5 day max.

Considering that twice I had to wrestle his arm away from pulling out the tube - which makes me feel wretched, and makes his heart rate and blood pressure soar - keeping him in twilight until tomorrow afternoon's trachiostomy is the better choice. I'm stayed with him tonight in my purloined cot in case he came up, but I love the night nurse and trust she'll keep him out, so I just left at 1 am to get some rest myself at home.

Had a total Terms of Endearment moment when I first got to the room and Dad/Bill and Dr. Ramnath got into it about Michael's care. Michael was pulling on my hand desperately and frantically trying to pretzel forward to reach the tube, while they were talking over each other. I finally yelled. "HEY!" They turned and looked at me. "Get him some fucking sedation! NOW!"

My outburst was effective. And Dr. R. (whom I'm sure has now dubbed me a hysterical female, as though I care) rushed Bill and I into a little conference room to finish the conversation, leaving sister Susie behind with Michael. (Susie's sleeping at our house, as we thought she and I were driving up north and may still be.)

We proceeded to hash out what has gone down with Michael, and the doctor clearly understood that Bill felt there had been some bad decisions made. The Dr. defended the decisions and we're stuck with the status quo, which is, as I understand it:

Michael was improving on all fronts after the tube was out. But they had taken a biopsy of a tumor/lesion in his lungs when they had done a Bronoscopy (camera down the tube), which was benign, but they keep saying they've seen that change. The lesion began to bleed (blood thinner had begun, which might have played a part) and swell and puffed into the lower airway on the left.

That's why Michael didn't feel well and then couldn't breathe and had a panic attack that brought fluid into his lungs from his heart beating so fast. That led us to the Apnea mask, which was driving the liquid out of his lungs, but became the new torture. Then he began not to do well on keeping oxygen in his lungs and they put the breathing tube back in. Oxygen got worse because the airway was totally obstructed. They did another Bronoscopy. That pushed the lesion out of the airway. His airway is clear again and his lungs are recovering already, but they fear that the lesion will puff up again. Rather than take it out, which is intense surgery he's not ready for, they want to put a stint (tube) in it with laparoscopy, so Michael's lungs can just heal - and then take the lesion out down the line (I can't even think about that).

They waited today to see if UCSF would say yes, because then they'd transport him and do the trach and stint at one time rather than put him thru two procedures separately. Since we don't know yet, they've scheduled the Trach for tomorrow afternoon, and will keep him in twilight until then (he comes up from time to time - but they're keeping him from getting agitated, thank God).

So...do we end up in UCSF tomorrow and postpone the Trach until then...or do the Trach at Twin Cities and then transport somewhere else sometime this week? Will it be SF or SD or LA - or someplace else?

Tune in tomorrow, folks, because I have no idea how it will go down. And for God sakes, keep praying.