Tuesday, June 06, 2006


I am not sure at precisely when they started to occur, but somewhere after the first thirty hours in the Pediatric Intensive Care Unit (PICU), the conversations began to get weird. This is by far the scariest part of what happens in the PICU, because it’s the part that alarms you the most, and yet, is the part where no one will provide you with the “real deal”. It’s the part where you know things aren’t going too great, or rather, you are beginning to cross that line of never coming back. These conversations are started innocently in the beginning, usually by one of the not so great nurses, in the PICU. Sometimes, these are the night nurses, but the conversations are definitely not started by the really good ones, because they know better not to go there.

The questions might start kind of innocently, like, “What’s his baseline?” Not a bad question to ask in the beginning, but a few days into it, it’s not looking like he’s coming back. So I would describe his baseline, which would be met with a look on their face, that was equivalent to a flat line on a heart monitor. A kind of disbelief, as if I were lying about this kind of thing, which I am not. It’s not that they can’t imagine it, it’s just that we are so far beyond that baseline, that it’s evident, it was probably the last time I would see that behavior. The question is asked of course, as if the motionless, comatose, teenager, hooked up to the ventilator, has a normal baseline of doing basically nothing. Then, perhaps, there might be an inkling of hope that his baseline, being similar to his current state, isn’t so bad.

Then there is the sweet nurse, who knows precisely what to say. She says, “I can’t wait to meet Dear Son when he opens his eyes.” I tell her all about him and she really was the best nurse, my favorite in the PICU. I bring in pictures of Dear Son the next day, from when he was younger. I bring in the pictures more for me, because I love to see his smile. She looks at the pictures in disbelief and blurts out, way too fast, “How long ago was this picture?” She means of course, did he go from being halfway normal to nearly dead in a few days?

Then I ask the question about being unconscious. This is a question that they all love. I say to them, “Is Dear Son unconscious?” I kind of know the answer to that, but I’d like them to tell me otherwise. His eyes have been swollen shut for almost a week now, other than the slit he exposed on Mother’s Day for me, and a brief opening on Friday at the local hospital. They are taking blood gases faster than I can keep up. He is totally unresponsive to me and I am unable to arouse him. The nurse begins to do the dance, not really wanting to answer my question until I back her against the wall, with my questions. It’s not that I don’t really know the answer to the question, but rather, I want a different answer than the one that I have in my head.

Their were lots of other examples of this weirdness, that escape me now. But I distinctly remember how odd the questions were starting to become, mostly from their end. It was as if they knew death was inevitable and yet, were hoping it was not. I simply wanted their honesty; that is always the best as far as I am concerned. Not answering my questions, or avoiding them, just makes me imagine things far worse, since I don’t always know what to expect. Honesty always brings me peace because it frees me from worry, although sometimes, honesty might generate a few more questions.

The next episode of weirdness comes at the microwave. I am heating up my veggie burger when a young Hispanic father, gets in line behind me in. He has a home made lasagna, that looks absolutely divine, compared next to my veggie burger and spinach salad. I ask him how long he’s been here. He answers, “Since one o’clock.” I didn’t mean him, I meant the patient. I cut him a lot of slack, after all, he’s in the PICU so things probably aren’t too great. He came in to relieve his wife. I asked him again, who was in the PICU. He said his thirteen year old son fell fifty feet out of a tree. Horrified, and wanting to know what happened without any gory details, I try to ask what’s going on. “Did he break anything?” “No,” he replied. I said, “He didn’t break anything?” I repeated my question in disbelief. “No, he didn’t break anything.” “That’s good news, I said.” Frustrated, I plugged on. I kept asking a ton of questions and yet, none of the answers would reveal the reason for the PICU admission. I continue on with the father and find out the child has some bruised ribs. O.K., I am thinking, you don’t get into the PICU for bruised ribs. My veggie burger is almost done and after a few more questions, he blurts out that his son had some holes drilled into his head to relieve the swelling. He tells me this, like he was reading the instruction manual on his pc. Very matter of fact. Zero emotion. Oh, my gosh, I think. I have a flashback to a conversation between a mother and a surgeon this morning in the hallway, where she asks about facial reconstruction. I wonder if this is the same child since the father mentions the fact his face was messed up too.

The microwave buzzes. I take my food and tell the father that I hope his son improves soon. You would think I would be a bit more eloquent in these situations however experience with this has not proved to be the case. I sit down to eat and the nurses come to suction the ventilator and World News Tonight comes on to talk about the war. Weird.


Anonymous said...

I so admire your strength as a mother of a special needs child and your blog allows people to have a heart warming "birds eye view" of you and DS. As a full-time, night shift nurse of 11 years, I wonder as to your choice of words when you state that conversations that are uncomfortable are "often started by night shift nurses." Do you mean to say that they are of less intelligence, kindness or ability as day shift nurses? I have worked 12 hour night shifts almost my whole nursing career and have worked in excellent hospitals..The University of Michigan Pediatric Rehab Unit (which is why I find your blogs so curious...I have taken care of many kiddos with similar dx's), Labor and Delivery, Mother Baby, Special Care Nursery

Anonymous said...

Continued...and consider myself and the majority of my night shift peers to be the ones that I would want taking care of me and/or my family. Please don't group a certain shift of nurses in one umbrella. I am sorry if the night shift has not been "up to par" in your experience but in mine, it has been. Thanks for letting us into your world.

Wrkinprogress said...


I believe you may be reading what DM said incorrectly. This is the part where she references night shift nurses: These conversations are started innocently in the beginning, usually by one of the not so great nurses, in the PICU. Sometimes, these are the night nurses, but the conversations are definitely not started by the really good ones, because they know better not to go there.

I read that as just a coincidental reference, rather than an indictment of the night shift personnel specifically.


Dream Mom said...

Let me clarify.....I didn't mean to imply anything in particular regarding day or night nurses so I was a little surprised by your comment. I am glad you gave me the opportunity to clarity it because I wouldn't want it to be interpreted incorrectly.

What I meant to say was that the more experienced nurses won't ask such leading questions. It was rather late at night when I wrote this and perhaps I could have phrased this a bit better. It was not my intent to offend anyone and certainly I don't view any one group, day or night, as better than the other. Today, women and men chose the schedule that best fits their home schedule and I am fortunate to have had good nurses on both shifts. I hope this clairifies it better for you.

Thanks too to WIP for clairifying in my absence:)

Kelly said...

Yeah, I totally understand what you mean about weird conversations. Like the time we put my daughter on high doses of valium at night. Ped Neuro Doc tells me he wants to start her on it in-house (hospital) to keep an eye on her respirations for the first night. So I ask him: "So if her respirations are affected when we're at home, then I need to call you?" He says: "Um, no..." I cut him off: "Ohhhhh, right, 911". He goes, "Kelly, we're not talking PROBLEM breathing, we're talking NO BREATHING. She'd be gone."

Ohhhhhhh, gotcha.

And then we went back to scheduling and general normal human conversation. Just like that.

I think strange discussions are simply a product of strange lives. Mine, of which, seems to qualify. Or so I'm told....

Fat Doctor said...

Lord, woman, you are a writer.

Anonymous said...

Just wanted to say thanks for writing. I'm pretty certain, given hints you've dropped in the past and these stories about Big Academic Medical Center, that it's the hospital attached to my university. It brought a bizarre sense of immediacy to the internet blogging world when I walked to class across the quad and sat in my classroom across the street from the hospitals and realized your story was happening just a block away. You and your son were and are in my prayers. I appreciate your writing, since I have a special needs cousin and friends with a severely disabled child. You help me to understand them and how to help them and love them. Sorry - I'm posting this anonymously since my blog names my school, and I assume you'd rather that remained undisclosed.

Anonymous said...

DM, I'm a pediatric intern at yet another Big Academic Medical Center, and will likely go into neonatology. I consider your blog as much a part of my education as my daily interactions with patients and attendings. Thanks for the insight. It certainly helps me to understand better about issues such as quality of life and futility from a different point of you. Thanks, and keep on bloggin'! Best wishes for a full recovery for Dear Son.

Kim said...

I'll be watching how I phrase my questions from now on. I can see how some questions can be mis-interpreted.

I do ask parents of special needs kids how they are different from their baseline, but in the ER it more to get a handle on just how sick they are. If I hear, that the patient has a cough for a day, that is one thing. Lethargy or decrease in usual activity is a different category....

Who knows more about the patient than the parent? : ) You'd be surprised how much I learn from parents!

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