Wednesday, October 12, 2011

I Cut, I Don't Throw Pills At It!

Choose one:
1.  He has a less than 50% chance of living.  The odds are he will die.
2.  He is the sickest patient in the hospital right now.  I don't know if we can save him.  We are doing all we can and will fight for him.

Given those two ways of conveying basically the same information, which one would you choose?  On August 8, 2011, I was told number 2.  I had previously been told that he had gone septic and was in full system shut down.  I know what that means.  The rest of the information was presented to me in a compassionate manner that showed that the doctors were not only knowledgeable about the medical arts, but also about dealing with family.

I wish all doctors had that skill.

Infectious disease has joined my list.  That list is getting longer, and it is not a good thing to be on that list.  I am at the point where I will be taking Dr. West's advice to tell them that after consultation with the trauma team, they are to come to do their examination, but then they are not to have any discussions with us.  All discussions are to be had with the trauma team who will then relay all information to us.

By way of review, this weekend it was the lovely infectious disease docs who sent Derek into a tailspin by telling him there was a chance he could lose part of his pelvis.  First of all, Bedside 101, idiot.  Enroll in it.  Stat.

As Dr. Perdue said, if we play the chance game, there is a chance he will develop blood clots that could travel to his heart and kill him and so many other life threatening conditions from lying in that bed for the past eleven and a half weeks since injury (81 days).  Are we going to sit there and tell Derek each and every thing that MIGHT happen to him so that he spends his days worrying?

Krystina and I might get hit by a truck walking from the Fisher House.  We almost got trampled by some terrified deer the other night.  Should we stop walking because of it?

I spoke to Dr. West about the impact of the way these doctors present information (this weekend wasn't the first time), and how it affects Derek, because I want him to have all of the information told to him, but told in such a way that he doesn't lose hope.  He recommended talking to them before they enter the room to find out what they are going to say and then coming up with a way to spin any negative news so that he has hope.  Telling him he has a chance to lose the pelvis is such a matter of fact way is devastating, especially when it is not up to this team! 

I spoke with Dr. Perdue and he said all they do is analyze the infections, whereas his team decides what to do.  They should not be discussing surgical options, and they should not be saying things to me like, "We need to be honest.  He might lose his hip."  We might strike a meteor next week, too.  And by the way, buddy, he's already lost his hip.  It's the pelvis we are not worried about.

I met them at the door and asked to speak with them about the results, and the timing was perfect to speak with them first, because Derek was in the middle of a breathing treatment and other care so they couldn't get in the room.  I explained to them my concerns about how information was presented, and asked if we could present it in a way that would allow him to have all of the information while not upseting him with worries he couldn't do anything about right now.

I was told that I wasn't entitled to all of the information.  Excuse me?  I was told that they don't give all of the information to patients.  Then he said the nurse told them that Derek needs to know everything.  First of all, why would the nurse ever tell them anything like that and under what circumstances?  When have I ever tried to keep information from him that a nurse had to intervene, which isn't his/her role, by the way?  Second of all, didn't I just tell them I wanted Derek to have ALL of the information but in as positive a light as possible?

I think it's time to do Dr. West's solution and have them simply report to trauma and let trauma tell us what's going on.  Dr. Perdue said it is ludicrous that a mother would ever be told that she is not entitled to all of the information when she is POA and by her son's bedside every day.

Derek had had enough this morning and wanted everyone to leave him alone.  He was feeling sick to his stomach and just wanted to be left alone.  Sam, our favorite OT, was working on his hand when he said this.  Dr. West showed up and I told him he was at the door.  He told me Dr. West was cool and he and Sam were allowed in any time!

I left the room, leaving Dr. West and Sam alone with Derek.  Dr. West asking Sam for a mirror because Derek wanted to check out his injuries.  Of course she could provide!  Sam is the resourceful one!  Dr. West walked Derek through his injuries by lifting the sheet and discussing each part with him.  I stood at the door for this part, because I wanted to see Derek's reaction to seeing the injuries "up close" for the first time.  I was glad he was doing it with Dr. West.  Dr. West talked about his "tinker toys" (the x-fixes) and helped Derek understand a little more.

Good news - we are down to three antibiotics!  Those infections are getting kicked in the tail!  As long as nothing more grows from the culture drained from the abscess, we are good.  White count was 7.4.
As an aside, housekeeping needs to step it up.  They clean with a lick and promise unless you get on them.
Derek went to PACU for a dressing change today.  The anesthesiologist was one we had not worked with before.  She didn't seem pleased speaking with me, so I let her try to get the information from Derek.  He has been unable to keep all of it straight and kept looking to me for answers.  When I tried to give her the information, she shut me down and went back to him.  I let her finish and then told her in front of Derek that he had been under a lot of medication and wanted me to be the one to answer these questions.  He agreed with me.  I then proceeded to give her the history.  This kid means the world to me.  I know they have the records, but I want them to have all of the information handy when they are sedating him.  Talk to me.  Communicate.  Besides keeping him company, it's why I'm there.

While Derek was having his dressing change, Krystina and I went to the SICU to complain about the ICU nurse who gave Derek such horrible care last week.  Barb was very pleased to meet with us and was horrified by some of the things I was telling her.  She promised to take action.

Dr. Goodlett said today, "I'm a surgeon.  I cut it out.  I don't throw pills and medicines at it."  I love that kid!  His rotation ends this week, and Dr. Clifford Raymond has big shoes to fill.  Is it possible?  The bar is pretty high.

Krystina fell asleep on the chair.  Derek kept asking for her, and I said she was asleep.  When I stepped to the door to speak with Dr. Perdue, Derek kept calling her.  When she woke up, he said, "babies! You're awake! I missed you. I tried throwing an icepack at you to wake you up but it hit the end of my bed."
I don't know how many of you are fans of Dancing with the Stars, but we have a wounded warrior on this season!  Check out his story at the link below, and watch the show to cheer him on!  Go, JR!!!

If anyone is putting messages in the Guestbook, thank you.  I cannot respond to them.  If you want a response, please use the email to the right.

Thank you for all the encouragement and postings.  They keep me going.  This is not an easy journey.  Running on four hours sleep, when I'm lucky, and trying to keep Derek's spirits up when he is lying still and unable to move even slightly is tough.  But we are doing it.  Your posts, well wishes and prayers help.  Thank you.

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