Rosie has a cyst on her gall bladder. We found that out when the neurologist’s office called at 7:30 on Thursday night to tell us they think she has acute Choleocystitis. They found it in a MRI of her lumbar spine on Tuesday. I stood in the dining room in complete and utter shock for a few minutes after I hung up the phone. Then, I started punctuating every sentence with the F word because it seemed like the thing to do especially after a month + long hospital stay. Had no one ever checked her gall bladder? Sadly, the entire issue got tabled for the night when her NJ tube broke and the K-Man had to take her to the ER.
Let’s start with that. The ER visit was bullshit and here’s why. When we were released from the hospital they told us to go to the emergency room if anything happened with the tube. Here’s what they didn’t tell us that we’ve figured out. The ER close to us isn’t prepared to help us. We found that out on a visit a couple of weeks ago when Rosie’s tube was clogged and they didn’t have the length we need (they did take care of us though). If you go downtown at night with a NJ tube, they can’t help either because there’s no one in Interventional Radiology to help place the tube. So, the entire thing was a waste of time and it was also a complete farce. Here’s what I was told happened.
After waiting a couple of hours before my hubby went all dickhead on them saying, “you do realize that my teen has THREE FEET OF TUBE somewhere in her body” they were seen. All the doctors were perplexed. Rosie, who had been without feedings for a while, asked for fluids and was told that “they don’t do that” (ironically, they wanted to admit her because she’d had no fluids and my hubby said no). One doctor asked her if she cut her tube (it’s in the back of her throat. Not sure how she’d get the scissors back there). When they finally let her go, they not only spelled “patient” wrong on the paperwork, they had her tube size wrong. If it was an NG, it could pass through her intestines. It’s not. There were three feet that would need to pass. At 3 a.m., we all sat dumbfounded trying to figure out the next move.
At 9 a.m., I called IR and explained the situation. The doctor called me back in ten minutes (the guy is amazing) and said he wanted to try to get the tube that there was no way it would pass. Within an hour we were downtown and a few hours later, under general anesthesia, they were able to retrieve the tube and place a new one. It took 90 minutes and I think shaved five years off my life. That doctor was a lifesaver and I told him so. Bright spot in the midst of a tragedy.
So, what about the Gall Bladder?
While we were downtown, I emailed our pediatrician. He ordered labs and of course, they were normal (by the way, my kid has been spitting up blood for almost two years and her hemoglobin is normal too. Big whoop). After exchanging emails all day, I basically told him that every single person in our family has had theirs removed (except for me. I wasn’t blessed with one) and my child has been complaining about pain on the right side, vomiting and is being FED BY A TUBE so we thought it was worth looking into. Today, he consulted a surgeon. I picked up the images and will drop them off tomorrow.
So, there you have it. Could be the gall bladder. Wouldn’t that be simple? Pop that puppy out and it fixes everything.
I would be remiss if I didn’t give a huge shout out to our neurologist’s office. First, they actually caught it. Looked for something that wasn’t “their body part” and reported. Second, they felt it important to take the time to call us after hours to make sure we knew. Told us to call the pediatrician and advised us to have him call in a surgeon. I call that amazing customer service and I’m seriously impressed.
But the rest of it? I am just shaking my head.