Dear Michael

Glad you are feeling so much better after changing your meds. Congratulations for taking charge and insisting on change. Morphine makes me very sick so I managed with panadol-related painkillers.

You are in my thoughts, love from Helen

Way to go Michael! By the way, John came out of the recovery room with 5 tubes hooked up. Got rid of 1 each day for the next 4 days, so hopefully you are ahead of that schedule. Glad to hear you are prowling the halls also. That's great. Oh, they also took 1\2 of John's staples out before he left the hospital and the other 1\2 a month later if I remember right. Amy

Thanks all!

Still in here!! UUgh!

Some 4th of July Weekend..But I feel like being here is earning interest in my bank accout of life, so that I can spend many great 4th of July weekends on the "outside" later.

I feel better still on the new meds, but they are having to stop them tonight since you can't take it for more than 48 hours.

I asked for just some Tylenol Extra Stength and you would have thought I had asked for a rock from the moon or something!

They are still "working on it"! But, I will stay on them before the last dose starts to wear off.

I spent time with Seth outside in the sunshine for a little, and have been trying to walk a few times a day.

They removed my drains today! Wierd sensations huh??!! But, glad to have to increased mobility.

Still on antibiotics and have a slight fever usually each afternoon and overnight.

I asked for some Ensure since I couldn't eat anythng this morning, and again, I AIN'T AT THE FOUR SEASONS!!! Never showed up, they said, "Oh, that's a medication since it is a food suppliment, so we have to get a Dr's order" Jeeze.

Anyway, I walked to the cafeteria myself and bought one. Felt good to get some nutrition and now I am eating semi-solid foods again.

I don't know how long I'm going to be on the anti-biotics, but I suspect that's the only reason I am still IV.

I plan on getting some good sleep again tonight.

Swelling inside the neck, and throat seem to be better and I have these weird twinges in the trama areas near my incisions...I am trying not to move my head too much, but the interns promise me it's ok to turn full left and right and up and down..we'll see.

So many errors here! One nurse left my IV infuser off for 2 hours until I noticed it.

Another, tried to give me a shot of morphine the first day just after I had administered a patient dose of the morphine!

Today, the nurse NEVER took my vitals! I finally went out before my last walk and took them myself in the hall.

So many things like this, I don't want to post them because I already sound jadded and unappreciative, but let's just remind each other, that you really need to be your own best advocate, no one, no Dr, no nurse, no hospital is perfect.

Anyway, thanks again for every thing you all have said...The good thoughts keep me going!

Love,

Michael

Happy Fourth of July Week-end Michael! I wish you many, many more much more enjoyable ones. I am hoping that next year you and Seth are living it up and can say to each other "remember last year?" .... Hospitals eh? well I would n't be here without them. Not cancer, but other problems. But can't they just be petty fifedoms? You need to be really strong to cope with a trip to hospital. Thinking of you.

You have a right to pain management. Demand it. Tell them you want to speak to a patient omsbudsman. I took morphine for months as well as being on a Duragesic patch (Fentanyl). They could also give you oxycontin, demerol or even Vicodin. They probably told you that because that's what in your chart. My wife had facial surgery and she had a demerol pump (self administered) right up until she was discharged. They then gave her Vicodin.

Be sure to describe your pain using the pain scale 0-10, 10 being the worst.

During radiation they asked me every day what my pain scale was. Tylenol extra strength - thats like putting a bandaid on a ruptured aorta. Remember the doctor has to put it in your chart - the nurses can't change or give you anything without a doctors order. Are you at Stanford? You can always have Seth bring you food.

What a rotten experience you are having. As I read more and more of it I am and will be eternally grateful to all of the medical staff and specialists who have been with me throught the surgery and two biopsies and my treatments. They have all been kind, understanding and simply a-1. I am sorry you are getting the nasty ones.

Morphine makes me see aliens and makes me feel like one. Does little for pain and just makes me sleep. Dr. White had me on Lortab liquid after my surgery and for me the pain was gone within 10 minutes of a dose. I believe it is Tylenol mixed with Codeine. I got an anti nausea script, a script for steroids to ease and help the inflamation and one for Zanax for my nerves.

I hope things start to go better for you soon.
Prayers going up,
Barbara~

Hi Michael, last night I kept thinking about you and the pain and the "pain in the necks" on your hospital staff. Hope you have the strength to kick some butt and get what you need until you get out of there. When John was discharged, we got an evaluation sheet to fill in and send to the administrator. And I told them very honestly about the things that upset us. Hopefully you will get the chance to do that also. Think getting well. How's Seth? Amy

After my last surgery they sent me home with liquid oxycodone, which worked much better than the liquid morphine.

But again, I do understand your frustration. I too was hungry and the dietary department kept sending up diet food with low calorie written all over it. They must have considered me a pain, because I kept sending it back telling them I've lost ENOUGH weight and to send me stuff with maximum calories in it.

One nurse walked into my room and went on and on about this soap opera that she always watches at that particular time (guess she was hoping I would change the channel so she could watch her favorite soap) I just sort of assumed a blank stare... lol.

Everytime I have gone into the hospital, they have had a shortage of patient rooms. The first time in January, they put me on an "overflow" area where they had cheaply converted office space into patient rooms. All patients had to share a bathroom down the hall. It was gross and they weren't real good about cleaning it after taking samples. The last time they had to leave me in the recovery area after surgery for an hour longer because there were no rooms available.

Michael you don't sound jaded or unappreciative, but realistic. One sort of HAS to stay on top of it all. Even at my last appointment, they mentioned a CT scan coming up in September. If I hadn't brought up questions on scan and followup care, I probably wouldn't have known. They also told me that I can't always count on someone contacting me about scheduling it up, so somewhere in the back of my mind I have to remember that if they don't call me about the CT scan, I better get on the phone and make the arrangements so THAT very important item doesn't fall through the cracks.

Jen

Yes, you would think in the hospital when you are that sick, you wouldn't have to ride herd on what they are doing, but you really do. I was last in the hospital weeks ago for about 9 days because I was neutropenic and had some absolutely excellent nurses and niurses aids BUT there were still some screw ups and flubs.

The biggest being that I needed Jevity for food through the tube and they sent up Jevity that had an expiration date of 2004 stamped right on it. It was actually so old, it had a different name and label becuse I guess they changed the name about a year ago. You think that might have gotten someone (dietician, nurse, someone) to CHECK the date (that's why I checked the date) but apparently not.

I compained and the nurse I complained to was VERY apologetic. The next day, the head dietician was in my room apologizing and blaming it on the fact that they ahd had to buy cans fromm another institution instead of a supplier because they ran short and it must have been "the other institution" that sent them bad cans. STILL doesn't explain why no one checked. Jeez. I'm in the hosptial because I have next to no resistance to infection and I could have eaten a can of something that had gone bad if I hadn't thought to check the expiration date myself.

Then I found out that there were two patients with antibiotic resistant infections on the floor, one on either side of my room and we had been assigned the same nurse. That's smart don't you think? Assign the same nurse to people with infections that can't be cured by antibiotics and also one of the patients on the floor most vulnerable to cathcing an infection. And hope that nurse ALWAYS remembers to wash their hands.

I found this out, though, from a really good nurse who was trying to convince me that if I was given a choice I should go home to recover, even though I was still running a fever. I took his advice.

Unfortunately, due to the shortage of nurses they are often given assignments of patients that are resistant to antibiotics and "normal" patients. If your nurse followed good handwashing, you should be fine. They should also use gowns and masks when going into a patient's room who has that type of infection. As far as not checking the expiration date on your Jevity, that is inexcusable. It does not matter if it came from another facility or not. It should have been caught by the dietician or the nurse, NOT the patient!!