Posts Tagged ‘Dr. Tepper’

It’s a whole new world…and there’s no place like HOME!

Friday, March 12th, 2010 by annemarie

I am so grateful to be home. I just had my 2nd night sleep in my own bed (not the uber noisy air/adjustable bed) and without being interrupted at 4:30 am for vital signs being checked; I feel almost human. Hospitals are definitly not the place to get rest. The pain around my new 2nd belly button is down around a 2-3/10, and only bugs me when I sit up, try to speak loudly or cough. I am beginning to get my head wrapped around managing a blow hole in my tummy. Imagine your tummy as a juice box for kids and you’ll get the picture. I am imagining that due to my bountiful bossom I will be able to protect and hide my 8 inch peg tube by taping it near the underwire of my brassiere, instead of letting it hang down to my belly button as I am currently so I can lie on my side for naps and sleep. I would hate to have it get bumped and accidently open up when I’m out in public! On the bright side I have a manually operated tummy flatulence moderator! Just what every gal needs ~ a new way to pass gas, on command.

This surgey feels like a milestone in more ways than one. I fear it is the 1st in a long line of invasive procedures that are meant to prolong life, however they limit the quality of it. I wasn’t clear that this procedure would limit my mobility so much until I spoke to my new Home Health Nurse who informed me if I am to eat with the peg tube it will take me 40 mins per can of formula, w 5 cans perscribed a day that’s 3.5 hours of time spent hooked up to a gravity bag “feeding”. 40 minutes at 5 distinct times a day…That’s alot of time folks! Also – there are NO organic or responsibly produced versions of formula for adults on the market, that I know of at this time- someone call Dr. Mercola! I want a safe raw food based healthy no dairy no soy good for me formula. ( dairy and soy produce too much mucus and this causes difficulty breathing) For a foodie like me having only 1 option is unthinkable! OY.

It’s a good thing I was out for most of my 20’s and 30’s, because I’m definitley IN now! As I look at the last month since our 1st fundraiser, I have spent an inordinate amount of time at home. 1st recovering from said fundraiser, followed by a 48 hour flu/food poisoning bug 2/21-23 then preparing for the scheduled surgery on the 26th…going in for the procedure getting knocked out and then coming home all drugged up…I hung at home having scheduled nothing due to my intended recovery~plus the weather SUCKED.
Then finding out the rescheduled surgery for 3/8 and the last 2 posts tell that saga…so pretty much a homebound month. It’s a good thing I love my home!

I am resting and thoroughly enjoying being a homebody, however I must confess had I known how life with a peg tube would actually look I would have done a round robin Chicago dining adventure to all my favorite spots in the weeks preceding the surgery! I’m going to have to schedule 1-3 diners out a month while the chewing and swallowing is still good. As it is I’ll be packing a 60CC syringe a bottle of water and formula with me wherever I go! Jeez oh peez! I am hoping I’ll get the clear to take baths again after I revisit my surgeon, Dr. Tepper~ who did a beautiful job by the way, according to every other Doc who’s seen it! Soaking in a hot bath has been a ritual of mine for many years and I’d really hate to see it go.

I’m in a bit of a battle for my independence: just in the last month I have needed support cutting my food- veal piccatta to be exact, and after my surgery I did need help with my bath and washing my hair~ Thanks MOM!!! My super fantabulous Home health Nurse Dina noticed that manipulating the “food” or formula delivery system was going to be a challenge for me given the weakness in my hands, if this gets worse I will need in home care MUCH more frequently than the 1-2 times a week I’m getting it now. More like 2 times a day UGH. I am SO not ready for that. I was SCREAMING to be alone after being in the hospital for 3 days, that was the most intrusive/ invasive part of the experience…Not being able to think or write or even sleep when you wished was the most psychologically annoying part, also exhausting I might add! I am unwilling to make like an invalid!

The emotional impact it just hitting Home now, I have installed a device that will gain me more years on the planet, and there is a cost to using it. Right now I don’t dare cry, laugh, cough, talk or eat too much as my stomach will cramp as I’m still sore after the surgery. Hopefully in the near future this device will allow me more freedom not less as I acclimate to using it and allow the new structures we have in place to support me! I am working on being willing to recieve. It’s never been a strong suit of mine and perhaps that’s really what this lesson is about, being willing to recieve and being willing to be cared for. Either way I’m certainly learning there’s no place like HOME.

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I asked for a doctor 8 times…Northwestern’s customer service SUCKED and it didn’t have to

Thursday, March 11th, 2010 by annemarie

First of all I want to thank my surgeons: Dr. Stevoff, Dr Tepper and Dr Wolfe my pulmonary specialist, as these people did a fantastic job, and I believe a thorough job creating and managing my surgery. I also want to praise Mike Hall from neurology, who I know was meticulous in his communication on my behalf. Some of their instructions got lost in translation , but we’ll get to that… The other thing I like about the above Doctor’s is that they are staight talking, no BS people who inspire confidence. Not so much for the Nursing staff on the 16th floor east on Sunday night 3/7 at Northwestern Memorial Hospital. Yep – I’m naming names in an effort to make a difference ~ I will be meeting with the head of that department to see if I can impact the lack of communication that resulted in a completely frustrating 24 hours before surgery for me in which the preperatory medications were not administered and I the patient got no sleep the night before! The night nurse DECIDED NOT TO ADMINISTER IT (THE BARIUM) BECAUSE SHE DIDN’T UNDERSTAND THE ORDER.

Last I checked her job is not to evaluate the efficacy of the order, and what bothered me most was after my repeated requests for a Doctor, and for her to call and confirm the order, she told me no doctor could be reached to confirm the order and no doctor was available to see me. This was all happening at 11:30pm AFTER I asked the tech taking my vitals to get the nurse, Ana ( who I had met at 7pm and who told me she’d be right back in with my barium by 8pm) and ask her to administer my barium at 10:30pm…when she showed up for the above conversation it was 11:15pm. I then asked for a Doctor the first time at 11:30. I didn’t get a Physician – I got the head nurse Gayle at midnight thirty. Gayle said nothing more than the order wasn’t clear, and they weren’t sure why they should administer the barium, at which point I told them AGAIN ( and showed them a email that stated the same) I was told I had to have it inorder to have the surgery and this was THE ONLY REASON FOR THE TUBE HANGING OUT OF MY NOSE and asked again for them to confirm with the doctor- and again they said the doctor wasn’t available – I asked them to find me a Doctor right away so we could clarify the order for them and for me. I went through this process again with a hospital administrator AT 1:30 am- a pretty asian woman who did more placating than anything, but again reitterated that – a doctor wasn’t available, and there was NO ONE THEY COULD CALL TO CONFIRM THE ORDER FOR THE BARRIUM. REALLY? SHURELY YOU JEST. This administrator said she was concerned about administering the barium because she knew it was a time sensitive thing and she wouldn’t want to do it too early ( SHE IS NOT A DOCTOR BY THE WAY)…and no there was no one we could call to confirm – no one available by phone, and no doctor available to come see me …
AM I IN A HOSPITAL OR WHAT? I was one grumpy upset no sleep getting freaked out about my surgery and pissed off uncomfortable patient! Not exactly the ethos of healing and good medicine, and for sure the worst customer service experience!

As you may recall from my last post the tube that was inserted up my nose and down my throat into my stomach at 6:30pm Sunday evening was ONLY THERE TO FACILITATE THE TAKING OF THE BARIUM. You may also recall that I couldn’t sleep due to said tube as it hung 3 feet out from my nose, and was constantly being bumped which caused me to gag and try to throw it up. Therefor I got NO SLEEP the night before my surgery, and I had NO FOOD in the evening due to the tube and anticipated barium.

I didn’t see a Doctor until 6am the next morning, and that was Dr. Stevoff who had just stopped by to check on me out of the goodness of his heart! I literally burst into tears with relief! With in 10 minutes he had at least gotten to the bottom of what happened, the nurse didn’t follow the order because she didn’t understand it, and yes I did need it (the barium) to get the surgery – so now the only option was to have it inserted rectally if I was to have the surgery today as planned. YIPEE KI YAY. There was no excuse for what had happened, and it was regretable. I didn’t like it but at least SOMEONE had gotten to the bottom of what was so…after 15 hours of uncertainty and Hell… I finally felt like I was being taken care of, THAT is what he provided. A big Thank you to Dr. Stevoff! BY THE WAY EACH AND EVERY DOCTOR I SPOKE TO TOLD ME THEY WERE AVAILABLE BY PHONE AND DIDN’T KNOW WHY NO ONE CALLED THEM ABOUT THE ORDER. Dr. Wolfe even told me she had called to confirm the barrium would be administered, and had been assured by the Doctor on duty that it would be. I don’t know what physician was on duty between 8pm amd 6am the night of 3/7/2010 accountable for 16th floor east room 1618 especially but you can bet your ass I am going to find out. Thankfully things were up hill from there.

LOVE the doctors- well most of them, and HATE the system. Sounds like a job for a consultant like me…I wonder if they’ll listen?

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