Tuesday, July 08, 2008

Mom doesn't seem to mind that I am blogging about her experience since her ERCP (Endoscopic Retrograde Cholangio-Pancreatography) and good grief that's an interesting name. Well if you've been reading this you know she went home Sunday. She was so glad to get out of that place. Ok yes Shands is a cutting-edge hospital with the best doctors.

But...what gives?

She was in there five--FIVE days and not once did housekeeping ever come in to clean the room, empty the trash, or clean the bathroom. Not once in five days did anyone help her bathe or even OFFER her a bath. Not once in five days did anyone change her sheets. She lay in that bed, hardly getting up and moving for five days. She couldn't get her meds, the doctor would not call my dad when mom asked him to (dad always had to track him down), the people who visited the person in her room were loud and obnoxious, the food SUCKED, nobody ever explained to mom what she should expect after the surgery, they sent her home extremely dehydrated with fluid around her lung.

Overall, it was a horrible experience. And in our opinion she did not get better at home, she got worse.

Dad had to call EMS to have mom taken from home to North Florida Regional yesterday morning. She could barely move and she couldn't breathe well. They determined fluid around her lung, where the pain had been, and at first thought it might be pneumonia but the doctor ruled it out saying it was either caused by the pancreatitis or it was a pulmonary obstruction. So, the doctor immediately called for extracting a sample of the fluid to be sure that it was caused by the pancreatitis and as it turns out, it was not caused by that. There weren't enough of the enzymes (Amalyse) to warrant it. This means it could possibly be a pulmonary obstruction which they are treating now. Anyway, she feels much better but is very tired. They are treating her dehydration, her respiratory issues and her Crohn's. Eventually she will have to have another surgery to have the stint removed that the doctors placed in her during the original surgery. But she says she will NOT have that done at Shands. No way!!

The reason mom had to go through all this to get rid of that gallstone in her duodenum was so she could go on Remicaid therapy for her Crohn's. It had to be done, but geez, the shit she's been through to get to that point? Oy vey!

The good news here is that she is going to get better with the kind of care she is receiving. Mom has one of the best GI docs in the country who specializes in Crohn's and he will take good care of her. Not to mention she's in a great hospital with people who care.

I'm not saying that the folks at Shands don't care--there are a lot of hardworking folks there, but this is mom's second bad experience with that hospital, they nearly killed her some 20 years ago, she was apprehensive about going back but it was either that or the Mayo Clinic for that surgery. She says she will NEVER go back, she will die first before she lets them get their hands on her again.

Anyway, I'm sure ma will be fine, in the meantime she gave her blessing on my ranting and raving about that "other hospital that shall not be named" (but was!) LOL.


  1. Anonymous7/09/2008

    I'm glad to hear she is improving at NFR. She has really been through alot. I have had some of the same experiences at "that other hospital". I keep hearing people say how good they are, but things never go well for me there. The last time Paige was there they gave her a bolus of iv fluids because they thought she was dehydrated when she wasn't. Then they thought she had heart problems because all that fluid built up around her lungs and wanted to start her on lasix. I talked to my trusted MD after the fact and he said they would not have hurt her, but they were definitely over reacting.

    Please keep me updated and let me know if I can help.

  2. I'm home, and I feel GOOD!! I can eat again, breathe with no pain, and have started on the Entocort Rx from Dr Sninsky...if only Jewish doctors could be saints... Thanks to everyone who sent prayers and good thoughts my way, I know that made a big difference. I cannot say enough about the nursing staff at NFRMC. They are excellent, excellent, Excellent! I have so much respect for every one of these men and women, I really cannot stress that enough. My mom is happy to be able to cook for us for a few days, it makes her feel needed, not to mention she's a great cook! BTW, I'm going to have that CBS Cheese Pizza soon!! I'm very happy to be home again, and I'm not going anywhere again! Sma