DSS and DNR

"Assault"/huntemann                                                                                                                                            Page 413

Chapter Six
Scene [5]

DSS and DNR

         While Maura was stalling our visits with Renee and planning a suit without our input, we were dealing with other forces. Kimee was still critical in the NEMC-NICU down in Boston, and DSS was showing more interest in her.

New England Medical Center, Boston
1998/12/02 Wednesday 15:09 [Don]
         I called NEMC and talked to Kimee’s nurse, Ann. She said, “Our feeding target is sixty cc per kilogram of body weight over a 24-hour period. She is now, today, up to about five cc per hour. That’s as high as she has ever been before she gets into trouble.”

         “And her tremors?” I asked.

         “They might be improving some, although they seem to be about the same for most episodes. When she moves her arms without tremors, they may still be there, but just so low we don’t notice them.”

         “I’ll take anything that gives us hope.”

         “She’s quite a remarkable girl.”

         “We’ll try to come down tomorrow after talking to DSS in the morning.”

         The nurse said, “Ugh, DSS. They’re a real pain lately. Good luck.”


Department of Social Services, Lawrence
1998/12/03 09:00-11:00 Thursday [Ferne and Don]
         Ferne and I went to the DSS office in Lawrence for the interview they had requested. Kimee’s social worker, Faith Coddon, met us at the door.

         As Faith escorted us through the cramped and box cluttered office of maybe twenty desks, the scent of cardboard and an neglected coffee pot followed us. Faith said, “We’ll be moving to new quarters after the first. We’re just beginning to pack.”

         There were only a few people working at the ancient wooden office desks. But each desk, whether attended or not, had a foot high stack of papers on it. I wonder if those are all 51A complaints. There wasn’t a computer to be seen in the place.

         Faith brought us to a small conference room where she introduced us to her new supervisor, Lori Ortiz, whom I had phone-tagged the week before.

         After some small ‘hello, how are you’ talk, they began asking the same questions as the police and the court investigators had asked last month. Except, their interests were mostly about Kimee, not Renee.

         We gave them the same answers as we gave the police.

         Lori eventually said, “We are not getting as much cooperation from NEMC as we did initially. Do you know why?”

         I said, “Well, I could guess. You call too often. They can’t be giving you an event-by-event account, all day long. They have to actually care for her, too you know. Besides, I understand some of the information they gave to you appeared in the newspapers.”

         Ortiz and Coddon glanced at each other. “That could not have been from this office,” Ortiz said.

         I said, “Because of the guardianship issue, I know we don’t have any real authority yet, but we don’t talk to the press and we asked NEMC to refrain, too.”

         Coddon said, “They give us some information every few days, but we’d like more. ‘Critical but stable’ doesn’t say much.”

         “Why?”

         “We have to know her condition to do our job. I need to know,” Ortiz said.

         I said, “Well, if all you need is an update, I can do that.” I took out my notes on Kimee and summarized her current condition and my observations of her tremors, weight gain and head growth concerns.

         After I finished reading Kimee’s stats, Ortiz asked, “Can we have a copy of that?” pointing at the logbook.

         I said, “No. These are my notes... personal notes... and I have confidential notes with our attorneys in here also.”

         Silence filled the room.

         Then, after a few seconds, Ortiz asked, “Well, we have the authority to subpoena many things.”

         I said, “Well, you just do that. But you’ll be under the gag orders issued by both courts. And I will be watching the newspapers, too.”

         Oops. Maybe a bit over the line, careful.

         Awkward? Yeah you could say the moment was a bit awkward.

         Ortiz broke the silence again with, “But we don’t want to work that way. We’d like to have the cooperation and support of the parents.”

         You doofus. You have been in two courts trying to prevent us from getting guardianship of both our daughter and our granddaughter. We haven’t done anything. It was done ‘to’ us... Why did I even agree to meet with you?

         But, hold your tongue, damn it. She can extract a lot more pain. I finally said, “Other than my notes, how can we help you?”

         Ortiz said, “Well, several things. First, we’d like to know what your feelings are about a DNR1 order...”

         My heart thumped hard several times. {{i}So that is why you wanted this meeting. To have an ‘open discussion’ about ending Kimee’s life. You bastards!

         This was our second encounter with a proposal for letting a child die. Renee, at Boston City Hospital in 1995, was our first. Neither Ferne nor I wanted to ever go through that agony again. Thank goodness, Renee semi-recovered from her coma enough to make that decision unnecessary.

         We said, almost in unison, "No DNR!”

         I added, “Of any sort. I want them to use whatever means are available to save and prolong Kimee’s life, including experimental methods if necessary."

         It is one thing to lose a hard fought battle for life. It is quite another thing to just give up. And how is it ever right to give up on someone else’s life, especially a baby?

         In my opinion, there is no afterlife. So, no one benefits from death, not even supposedly the loved ones left living.

         Maybe it was latent hostility from my response to her about my logbook, but I got the distinct impression from Ortiz’s question that a DNR was more of an economic factor for DSS than one of compassion.

         I looked right into her eyes and said, “We know the odds are long for Kimee’s recovery to a normal life. But we hope she can have ‘some’ kind of life. We also know all the good her organs would do for other kids with better chances at life than she. We’ve heard it all before.

         “But, Kimee is still fighting to live. Without life, there is no hope.”

         Ferne nodded in agreement with a determined but sad look in her eyes.

         Apparently our answer wasn’t what they were looking for. Ortiz never got to the second or third ‘things’... the meeting was over.

         As we were walking to the door, Coddon said, “I will get Kimee's paperwork started for her Mass Medicaid benefits. It will go through the Juvenile Court, which was called the District Court some time ago. Kimee’s case is different... well bigger, than most of what DSS does.”

         Ortiz said, “There are more lawyers being appointed as we speak.”

         I wondered if DSS was also aware of Maura’s latest move. Is that what’s she’s referring to? ‘More lawyers being appointed as we speak.’

         What else are they keeping from us?


NEMC
1998/12/03 12:30-14:38 Thursday [Ferne and Don]
         After the DSS meeting, we drove down to Boston to visit Kimee. We arrived at NEMC a little hungry. So we bought lunch at the Au Beau Pain on the first floor and ate it in the NICU conference room outside the unit.

         While there, Dr. Binney came by and talked to us for twenty minutes about Kimee. I scribbled more notes. He said he will be moving on and the new rotation resident doctor will be Elizabeth Cole.

         We suited up before going into Kimee’s ward. Kimee’s nurse for the day shift was Carroll. She said, “We have her up to 7 cc/hr, about half way to full feeding through her tube.”

         Ferne and I both got to hold her for 30 minutes each. Her tremors were still present, but as I was holding her, she moved her arms without them. I cupped her right arm in my hand and felt something like a faint shiver when she moved it.

         Is this an improvement? I sure hoped so.


         Saturday evening, I called NEMC and talked to Barbara. Kimee was still in getting an MRI with her day nurse, Ann. Too many names to keep straight. With such a big place it was becoming impossible to remember who the important people were. They’re all important, damn it. Yeah, but with all the legals, police and DSS, I was relying more and more on my notes to remember who’s who.

         I blithered away trying to record what I heard... Kimee is still on the vent... they have removed the PICC2 line from her arm... she doesn’t need the intravenous line now because she is getting all of her nourishment through her feeding tube... she still has tremors, although she does move her arms without them.

         I stopped her and told her what I felt last time I held Kimee.

         She said, “That’s certainly possible. That would be very subtle. We don’t hold her much ourselves.”

         But isn’t that what a baby really needs? I promised we would be down again tomorrow.


NEMC
1998/12/06 18:10-20:37 Sunday [Ferne and Don]
         We visited Kimee at NEMC and just missed her nurse, Ann, giving her a bath in the tub. She’s now a month and a half old, weighs 4 pounds 14 ounces and is up to 140 cc/day through her feeding tube. They will go to 150 cc/day (100%) tonight.

         We both got to hold her again for 30 minutes each. She opened her eyes for me this time. I moved my head from side to side hoping she would track my face... she didn’t. Just those two perfectly formed, deep brown eyes looking straight through my heart.

         I wondered what thoughts she might have. Does she know there is a world of people concerned, both positively and negatively, about her? Does she know we love her? Or is she concerned about far more fundamental things... like breathing.

         We had brought in the Gershwin and Mozart tape for her and played the Mozart side.

         While Ferne was holding her, she pooped again! Even under her face mask I could tell Ferne was smiling as the sweet smell of “baby” drifted up.

         The nurse celebrated. More data from her insides to be analyzed. She placed the tiny diaper, its contents and several wipes used to clean her into a sterile bag and sent it off to the lab.

         The NICU nurses change shifts at 19:00. Ann left and Barbara came on for her 12 hours.


Pages: 9
Words: 1,760

Footnotes
1  Do Not Resuscitate – A record placed in the patient’s chart that shows the medicals what to do if life threatening conditions occur. This is a simple document if the patient is cognizant enough to understand it. It gets more complicated if the patient is already incapacitated. In our case, we weren’t even in the position of normal parents or grandparents. Guardianship had not been assigned yet. DSS and the GAL were given this authority.

2  A PICC line is, by definition and per its acronym, a Peripherally Inserted Central Catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body, the extremities. And typically the upper arm is the area of choice.
Note care of http://picclinenursing.com/picc_why.html