Thursday, August 06, 2009

No rest for the weary…

(Authored by Kate the Kind) (posted by Br’er Liar)

I thought that 11:30pm to 1:30am was going to be the worst of it for my shift. Unfortunately, this was not the case. She slept until 4:30a.m. waking up in such pain (shoulder and back) and waves of nausea that she could not return to slumber. She could not even find a comfortable position in which to lie. 5:50am Zofran, no change. After I made two frantic nurse calls, they finally came to see for themselves how much she needed relief and that I was not going to stop pushing the call bell until they did SOMETHING! At 6:15a.m., the nurse arrived with a different pain medication - Dilodin (morphine derivative, I believe). Apparently this was chosen to provide a “breakthrough pain med to assist with Fentanyl withdrawal” (when did they decide she was in withdrawal???) This was a feeble attempt, at best, and actually ended up worsening an already bad situation. Dilodin was absolutely awful. Instead of pain relief, for which it was intended, horrible stomach cramping ensued. More vomiting. Exacerbated her shoulder pain, pain at abdominal incision and JP drain sites…

8a.m. Rounds: Docs decided that additional blood testing is to be done today (to check liver, pancreas, thyroid) to determine what is the source of this constant nausea. They also decided that two of the three remaining JP drains will be removed. The hope is that removal of these drains will quell some of the referred shoulder pain. When I reported to the profuse sweating that endured through the night, the “rounds team” reinforced that this symptom is more likely related to withdrawal from pain meds (fentanyl) than removal of ovaries. OK, so now they give these horrid symptoms a name: withdrawal syndrome. It could last 48 hours, but it will end, we’re assured.

9:30a.m. Painful removal of 2 of the 3 remaining JP drains (the last is still draining too much to be removed), but hopefully the pain will be worthwhile to get rid of the shoulder pain… we’ll see. Doc OK’d another med for nausea, since the Zofran isn’t cutting it.

9:40am She’s vomiting again. She’ll get the new anti-nausea in about a ½ hour. Discussed lack of clear liquid diet consumption with the doc and nurse… They are wondering why she’s not drinking anything. Um, hello, have you heard her report her nausea for the last 12 hours???? And, no, she won’t drink chicken soup, and the juice acidity will aggravate an already sour stomach. What’s plan B, folks?

9:45a.m. Yet another tray of clear liquids left room 2NW 20 without one thing consumed. I think we’re now all agreed that clear liquids are not a good choice. Mindy (favored nurse from previous post) thinks mashed potatoes (part of a FULL liquid diet, as opposed to clear liquid diet) are in LMs future.

10:00am Doc reports that LMs white blood cell count is UP! It was 2.7 and is now 14. Doc is very pleased with this. Unfortunately, LM is still too ill to be excited about this step forward.

10:15am Here comes Mindy again. She brings Fenigren, a different type of anti-nausea med, which doc who removed JP drains had promised. It burns going in, but it has a desirable side effect: sleepiness. Much deserved.

10:45 No longer writhing in pain or vomiting, but not yet in the peaceful sleep state we desire… keep your fingers crossed.

The plan for the rest of this Thursday: Sleep. Sleep. A little food, a little walking. Repeat.

Best part of this Thursday for LM? Sean is due back around 4pm.


A slight addition by Br’er Liar:

It never ceases to amaze me how little common sense some professionals apply to their job. The medical personnel act as if the fact that a clear liquid diet was authorized means that it necessarily: (a) is provided; and, (b) is consumed. Despite things such as ongoing nausea and the sweating and the pain and all sorts of minor discomforts, some people act as if their authorization/order on the chart means that must have occurred. I am just so relieved that Kate was present to act as Lisa Marie’s advocate.

There are the minor conveniences of having a bedside assistant in the form of a friend or relative present at all times. Let me note a few (all of which I have observed Kate and Sean provide in the past two weeks). Someone to put on and remove the inflatable cuffs. Someone to massage your shoulder. Someone to push the pain button periodically while you are sleeping (screw the rules against that particular practice). Someone to gather the materials for a self-administered sponge bath. Someone to hit silence while tracing the line to remove a distal occlusion on one or more of the pumps. Alternatively, someone to hit the silence button on all the machines until the nurse comes to change an empty bag. Someone to unplug the machines when you go to the bathroom or go for a walk. Someone to bring you a toothbrush, toothpaste and a basin to spit in. Someone to turn up the suction on your NG tube to clear an obstruction. Someone to push the nurse call button and talk when the patient’s voice has given out or is too hoarse and raspy to hear through the microphone on the bed. Someone to bring you skin lotions, and moist wipes, and shampoo or conditioner. Someone to help you wash your hair. Someone to hand you your comb and brush. Someone to adjust the fan to cool you off, or to open and close the door to provide fresher air. Someone to hand you the phone when a call comes in and you are conscious and able to speak. Someone to hand you a basin when you vomit. Someone to hand you a rinse cup to get the taste of vomit out of your mouth.

All of the above is just the rapid product of stream of consciousness. If I sat here for 5-10 minutes I am confident I could double, treble or even quadruple the number of things listed as there is more. But note the point is that these are merely minor conveniences. The reality is that the major convenience is a full time patient advocate. Because: (1) even if you are a highly educated Mistress of the Alchemical Arts; (2) even if you have read everything you can lay your hands on about cancer treatment and care; (3) even if you have already spent a few weeks in a hospital earlier in the year and know some of the ins and outs; it just does not cut it. You are sick and you are unable to even make your needs clear with sufficient vigor and force to penetrate the shell that medical personnel, who see sickness and suffering every day, have surrounded themselves with in an undoubted attempt to avoid being overwhelmed by the misery of it all. Whether it is continuing to push the nurse call button until you get their attention, arguing with the director of nursing to get the heck out of the ICU, or arguing with the doctors about needing pain or nausea relief NOW.

Please excuse me, it is 11:35 a.m. and Lisa Marie is vomiting again.

30 comments:

Anonymous said...

I hope today is a progressively better day. Hang in there. AJ, you're all in my thoughts daily. K

Sara said...

You're so right about the necessity of having an advocate for the patient! And don't forget that you're also helping Sean and everyone else by just being there. Thanks for taking such great care of Lisa Marie!!!

Anonymous said...

LM, I'm sorry you hurt, I don't want you to hurt and I pray for you to stop hurting now. We love you and want you to be and feel ok, ok? Margaret

sally said...

Kate & Art:

Don't know where my earlier note to you went and don't want to call for fear I would wake Lisa. Do you want a break? Can be over at WHC in 40 minutes. Sally
(708) 289-4498, sallyhastings09@gmail.com.

SullaVinos said...

I teach a course in patients' rights at a law school and your (Art's) post regarding patient advocacy would be an invaluable reading.

Anonymous said...

Bless you Kate for coming to help Lisa Marie, Sean and Art. It helps to know that your loving care was there.

Prayers still for pain to subside and lots of sleep. This seems so much worse than the ICU. Hope to get you back to H-Town sooner than later. Michele

Anonymous said...

Thank God for angels.

Anonymous said...

Kate and Art -- as said by so many, thank you for being there with Lisa Marie through this major bump in the road of recovery. I agree with the person who reminded us all of Sugarbaker's discussion regarding the major surgery and manipulation of so much of LM's internal organs. Lisa Marie, you are doing so great considering all you have been through. Continue to allow Kate, Art, and Sean be your advocate and support. you will be "going back to Houston, HOuston" soon. We love you. Kim and Dave

Varina said...

In the face of all that is awful, I say we find something to laugh about. To that end, here are some truly terrible jokes. No worries, they are all clean and kid-friendly, totally shareable.

What is brown and sticky? A stick.
Why couldn't the astronaut land on the moon? It was full.
Did you hear about the two silkworms who ran a race? It ended in a tie.
A nun walked into a bar. Ouch.

iCarGuy said...

LM... we are praying and have many here and across the country doing the same. Hang in there and you will be back in Houston soon.

Oh, congrats on the white count... the 2.7 was higher than mine in June.

As always, Hugs.
Michael

Anonymous said...

I'm so sorry. Hang in there everyone. Praying for the pain to stop and for a restful night. Love, Kathryn

Anonymous said...

I am sending you thoughts of peace and comfort. I hope that all of you can find some peace and comfort tonight. Allison

Carolyn said...

LM - I'm so sorry you're enduring all of this. It seems like someone made a mistake if you're actually going into withdrawal in a hospital. I just can't fathom it - I wish you and your family had at least been warned it was a possibility. It sounds harrowing for all of you. Hopefully your memory of this will be faint and blurry, and you can soon enjoy your sunny prognosis.

You're such a tough cookie (i still remember my shock at seeing you prancing around Poe-Co right after your C-section), of all people you can get through it. However, it's just too much to ask that you do. I hope to read some better news soon. Take it one minute at a time - like riding an elevator.
love Carolyn

Leslie said...

Although there is nothing like LM is going through, Kate Art and Sean deserve a medal for what they have gone through right there with her. I cannot imagine anyone that has to go through this alone. Thank God for good family and friends. Am praying for you all to keep strength!!! Hang in there. One day closer to home every day.

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