After nearly maxing out her allowable morphine and versed dosing, chloral hydrate was added to her sedation arsenal last night. And, finally, peace settled over the room. A massive-quantity-of-drugs-induced peace, but whatever. Actually one of our PICU nurses, Genny, suggested this option days ago. But, you know, our PICU nurses rock. Hard. And I'm not just saying that because, evidently, they are reading these entries (Hi, guys!). They really are amazing. Our experience in the PICU this time has been so much better than our memory of the PICU pre- and post-transplant. And it's mainly because we haven't felt that the nurses' job description includes the line, "Chase parents away from bedside."
(And I should have noted that my PICU Parent/Nurse "manifesto" was actually just my thinking after a conversation I had with our nurse about the difficulties that might arise from allowing parents more participation in PICU care. In particular, how to deal with the touchy issue of teaching parents how to be good PICU parents. It's not as if it's covered in the "What to Expect..." books. So it was actually a lot less dramatic than "manifesto" made it sound. But, like Annika, I tend to go for the flourish. Still, I'll send it to those of you that asked, including the additional suggestions from other parents.)
So last night was wonderfully serene. Her hemoglobin was again dropping and the blood bank had blood on hold for her, but then (Christmas miracle!) her hemoglobin, at the very border of too anemic, began rising again. We haven't seen her hemoglobin rise spontaneously (i.e. without transfusion) in weeks and weeks. Not only was that great news in itself, but also meant that she avoided having to have another I.V. placed to give the nurse sufficient access for all the stuff being pumped into her.
I can't call it a day, though, without indulging my obsession with ventilators. My erstwhile PICU neighbor and I were yesterday discussing the difficulty of constantly readjusting your goals to deal with the setbacks and general slowness of recovery for a critically ill child. (Remember my last goal, "conscious for Christmas"? Not happening, of course.) She told me that her new goal was to have one of the machines removed from their crowded room. Her son is on a ventilator, too, but he's also on dialysis and his I.V. double pole is even more crowded than Annika's, which really is saying a lot. When her son's doctor asked her which machine she most wished to be rid of, she replied without hesitation, "The ventilator."
She told me that the doctor was surprised that she hadn't chosen the dialysis machine, since it involved a neck shunt and cycling the blood out of his body and was just so much more invasive. But I think I would have made the same choice.
There is a difference between "life support" and being on a ventilator, but the difference, surely non-subtle to a medical professional, is more difficult for us to recognize here at the bedside. There is something so elemental about breathing that any type of machine support leaves us feeling our child is more vulnerable.
While I know in my head that a functioning liver and kidneys are necessary to sustain life, their functions are hidden and their jobs more difficult to describe. But the breathing of the lungs and the beating of the heart, their functions are clear and I can see and feel them working so easily. Who doesn't remember the magic of first learning to feel your own pulse? And watching a chest rise and fall as a sign of life has been immortalized in songs and poems over and over. The ventilator, such a commonplace to PICU professionals, stands as a threshold to a boundary we parents would rather avoid.
So, yes, I'd choose the ventilator, too.
Some questions that have been asked and not answered:
- Amanda asked if Annika's abdomen had been left open before. Yes, it has, after one of her transplants. However, it was only for around 5 days, not this crazy 3 weeks stuff that they're talking now. Amanda also was wondering about the mystery of Annika's bleeding issues. The source of her bleeding is no real mystery: huge esophageal varices. The only mystery is why she still has varices after the shunt surgery, when the shunt appears to be working. The doctors did some research and found that there has been a case of a shunt taking 4-6 weeks to work. So we'll hope she's taken that route, rather than having vascular issues that the shunt has not corrected, which is another possible explanation. Meanwhile, the bowel perforations and the massive abdominal infection have taken center-stage as cause for concern, and we've not been talking much about her bleeding. They are planning to rescope her in 5 weeks, assuming all is going well with the perforation and infection.
- Do I teach writing or English or composition or something along those lines? Nope. Those gigs are hard to come by, you know, and for some crazy reason they tend to give them to people who are actually qualified in that area. I teach a computer programming course, and not even a hard-core programming course, but the gentle introduction offered to students who are otherwise completely uninterested in computer science. My proudest instructional moment was when I decided to teach the formal conditional structure by creating a virtual bar bouncer.
I am, though, a big proponent of writing as therapy. Not just writing down the facts, but trying to shape them into a narrative and draw connections with larger ideas and other experiences. That's why I started the Postcards from Holland site, which I am sorry to say I have sadly neglected. Although the ease of starting your own blog has made such an endeavor somewhat unnecessary.
- Would we enjoy visitors? Yes, Sarahlynn I would love to meet you. My social calendar is, surprisingly enough, completely open. Of course, please come by only if you're all healthy. Obviously Annika shouldn't be exposed, but any sickness I might contract would be too easily passed onto her before I even showed any symptoms to indicate that I should stay away.
- How do you stay sane in a situation like this? I have this game that I was playing with some of the nurses, but I have kept with it long after everyone else has grown bored: I try to come up with celebrity look-alikes for each member of our medical team. I think I'm going to have to subscribe to People or Us magazine, though, if I really want to take my playing skills to the next level. Mainly Jörg and I indulge our penchant for dark humor.
- When Dr. Superina came out of surgery to break the news that the rex shunt wasn't going to work and they were going to do the distal splenorenal shunt instead, he drew a diagram of her anatomy on a white board to explain the problem with the rex and how they were going to do the alternative shunt. As we sat together in the lounge afterward, we mulled over the information.
"So I guess this other shunt is easier...At least it looked that way on the board."
"Of course it's easier. Didn't you see? He just has to erase a few lines! No big."
- When the respiratory therapist came by today to do Anni's treatment, which normally involves banging around a bit on the back to loosen congestion in the lungs, we expressed some concern about getting to Annika's back while her abdomen was still open.
"OK. We'll just roll her over and ask her to please put her hand right here and hold everything in!"
"Make sure you've got Dr. Superina's page number close by. 'Dr. S! I think we lost something over here!' "
"Does this go back on the left side or the right?"
The respiratory therapist shivered and said, "Oooo. You're putting my back in knots!" Then she was paged away, and we haven't seen her since.
- Did Jörg really beat up Santa Claus? What a silly question. Of course not.
We just egged his sleigh.