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Do you love me? Do you REALLY love me? Part A

Friday, August 04, 2006
written by Java Junkie

The exact name of the procedure they tried to do on my Dad was "Left Lower Lobe Video Assisted Thoracotomy" but they had to give up on the video assisted and just go for a regular thoracotomy, which creates a much bigger incision and a bit more recovery but not much. The tumor was essentially in the center of his lower lobe so trying to direct a miniature video camera through lung tissue to it was next to impossible really. Luckily the doctor knew almost exactly where it was and the incision was only 4 - 5 cm long. The surgery went extremely well. They didn't need to give a tracheotomy, which they had thought was a strong possibility because my Dad's radical neck dissection 5 years ago and the following radiation and chemo has left his throat with no left side muscle and tons of scar tissue. They were also almost positive that if he didn't need a tracheotomy he'd at least have to have a breathing tube in for a day or two. The thought of this absolutely terrified my Dad and we were extremely blessed because he was breathing very well on his own after surgery and they were able to remove the tube almost immediately.

What followed afterward, however, was a different story. While not technically an after surgery issue, the surgery itself started two hours later than scheduled and afterwards it took the hospital 4 and a half hours to find a bed/room for my dad. His surgery was scheduled for noon and it wasn't until 9:30 at night that I essentially demanded to see him because no one had yet told him the news of the biopsy and this is what scared him most (naturally.) They had just gotten him a room and were still hooking up IV's and such when I bounced in and told him it was negative. He managed a smile and a thumbs up before slipping away under the influence of residue anesthesia. He looked incredible for someone who had just been through such an ordeal. His color was great and the minimal nose tube for oxygen was beautiful compared to what we were told to expect. We were lulled into a false sense of security by the RN's almost eager sharing of information. What machine did what, told what, what it meant, what they were looking for, what each tube was doing, etc. I asked about diet because not only was my dad the world's pickiest eater BEFORE his RND 5 years ago but now he's essentially on a soft diet because this fact combined with the scar tissue, lack of muscle control and the fact that his saliva glands were burned out by the radiation has left him with only a handful of food items that he can and will eat. I was told I could bring some yogurt in for his lunch and by dinner he should be on a normal diet. I asked for the dietitian to come first thing in the morning. After watching over him for a half an hour or so, Monkey and I made our way back to my (step)mom's house.

We woke up, made a quick trip to the grocery store and headed over to the hospital. They had my dad on an epidural for pain along with self controlled morphine. It seemed to be doing ok. Now understand that while my dad is a big guy, he's very sensitive to any and all pain medication whether narcotic in nature or even as simple as Advil so this was more than enough. Monkey and the boys had to head home Friday evening so sometime mid-afternoon after Dad had ate two Yoplaits and assured he was good for a couple hours we headed back to Mom's house where Monkey and I crashed for a little while on the couches while Parker finished his second nap of the day. When we were all rested we all hopped into the van and headed back, boys in tow with a plan to meet my Tover and his boys there. Monkey and the boys dropped me back at my mom's on their way back to Toledo. The next day my opinion of the hospital would go to hell in a hand basket.

I got their around 11:00 because I had stopped at a Michigan/Northern Ohio/Northern Indiana store called Meijer. They're a fully stocked grocery store, extremely decent department store, pharmacy, deli and coffee house all in one. I wanted to pick my dad up some more yogurt, myself a cooler top and a couple games for the DS to keep me busy during dad's naps. When I got there he told me that the epidural stopped working sometime in the morning and rather than call the anesthesiologist back in they simply removed it. However what they didn't tell my dad OR I was that along with the self controlled morphine they also put him on a morphine drip AND they were injecting his IV with both an anti-inflammatory that causes drowsiness and a narcotic based pain reliever geared toward muscle pain. The dietitian showed up and my dad and I worked together with her to make sure she understood the kinds of food he not only would eat but COULD eat. He fell asleep shortly afterwards and a couple hours later I slipped out for some lunch. By the time I got back he was so drugged out of his mind I couldn't get more than one or two words out of him before he was passing out, even to the most important questions. And every time he sat up for any purpose at all he was puking his brains out. I repeatedly told the nurse that I felt he was on too many pain meds. Repeatedly she'd smile and nod and promise to "look into it." They also were taking more than an hour to bring my dad some more water, come to change sheets he had bled and vomited on, left him sitting passed out in a chair hooked up to various machines for an hour AFTER I requested help getting him back into bed (and was told someone would be in right away to help). He was left in a dirty, bloody, hospital gown and after they brought him in the things to change and wash up I was left to give him a sponge bath myself (not that I cared, I just think it's something that should be done by someone who knows what can and cannot be unplugged for a minute should do.) For dinner he was brought a cheese burger. My dad's daily diet consists of yogurt, Johnny Rocket's chili (which is very "Hormel no beans" like in consistency) and the like because of his radical neck dissection and the toll the radiation had on his mouth, tongue, and saliva glands. Essentially there is no muscle on the left side of his mouth and throat, his teeth and saliva glands were destroyed by the radiation and they didn't want him to have his dentures, either. And they brought him a CHEESEBURGER. When I took it back out and explained, once again, the type of foods he could eat I got the nod and the smile. An hour later the RN asked if ANOTHER cheeseburger had been brought up to the room, this time cut up. I wanted to say "My dad had surgery on his NECK, NOT his brain! If he could eat normal food if it was simply cut up he could cut it up HIMSELF" but opted instead for something less offensive to which the RN suggested they put it in a blender for him. I asked her if SHE would eat a cheeseburger that had been "blenderized" to which she replied with a grimace and a head shake. I smiled politely and said "Exactly. Just because you CAN do something doesn't mean you SHOULD."

After I came back from a dinner with my Tover and his kids they had finally agreed that he was on way too many pain meds and taken him off the morphine drip. He was a bit more coherent, in that he could actually get most of a whole sentence out before slipping back into unconsciousness. I knew it would just take some time for all of the drip to wear off and stayed until about 10:30 at night before heading back home. He called me by 10 the next morning telling me he essentially demanded to be released because after the drip did wear off he had the worst night he's ever had in a hospital, complete with the aid putting his ice water next to his used but not emptied urinal bottle.

I'll write about getting him home tomorrow. It's much more interesting and funny. All in all I'm ecstatic at the results of the surgery but severely disappointed in the hospital's performance in my dad's after care. It's the entire reason for the title of this post but as usual I got a little long winded. :)
12:03 AM ::
  • Glad he came through it well.The hospital part is horrid though.

    Just curious, what hospital?


    By Anonymous Anonymous, at 1:28 PM  
  • Ingham I think - the one that's by Holmes and Cedar.. Let me look it up.

    By Blogger Java Junkie, at 1:43 PM  
  • Yeah, Ingham Medical Center.


    By Blogger Java Junkie, at 1:45 PM  
  • This is exactly why I feel it is so important that patients never be left alone in a hospital without someone who cares about them helping care for them. Just think about what would have happened if you weren't there with him! They *should* take good care even if you aren't there watching over the patient and making sure, but obviously they don't. It terrifies me every time I have to go to the hospital for these same kind of reasons! Last time I was there, I felt sure that two nurses in particular were trying to kill me while changing my medicine drip. Luckily I yelled so much that they labeled me as the "fiesty patient" and then had another more competent nurse come in and take care of me. Thank Goodness!

    Plus, I totally get the radical neck dissection and salivary gland issues. I have some issues with salivary glands (not too bad right now) from my radiation and they are not fun at all! Yucky stuff!

    By Blogger radioactive girl, at 9:38 PM  
  • Glad the surgery went well and he's recovering but what a horrible story of his care afterwards. you must have been FURIOUS!

    By Blogger kittenpie, at 9:40 AM  
  • I work at a hospital and I truly hope you bring this to the attention of as many administrative and board members you can get your hand on. Write a letter with specific details and Cc: it to every name you can find. I guarantee they will appreicate being informed, because I know the nurses don't tell their managers a patient is unhappy (especially with THEM). I've seen staff fired at my health system for less. Some people do not belong in patient care.

    By Blogger TaterTot, at 3:40 PM  
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