disclaimer: The following rant does not represent my feelings about every hospital or every doctor. I have nothing but the highest praise for several doctors and hospitals, including those who were directly involved in saving Brady's life and those who continue to provide our family with excellent care. The following rant is directed towards the many hospital personnel who have failed to do their job due to oversight, laziness, or pure stupidity.
Today really sucked. Excuse my crude language, but it was awful. Earlier in the week when the anesthesia care unit nurse called to go over things, I knew I had better ask her if she received the requisitions for Brady's bloodwork and urine test. These two things are always performed during Brady's scans and the samples are sent directly to the lab. Of course, she hadn't received them. Matt faxed the Pediatric Oncology Department requesting that they send the requisitions down to the nurses who would be working with Brady today.
Of course when we got there this morning at 6:45am, there were no requisitions for blood and urine. Annoyance #1 of the day. The nurse promised us that she would call teh oncology department and have it taken care of. We knew this would prove to be more difficult than that, so we made a plan to go up to the department ourselves once Brady went in for his MRI.
Before the MRI, the anesthesiologist came in to talk with us. We had requested a specific anesthesiologist earlier in the week. We have learned through a few bad experiences that having a doctor who actually listens to you, takes your experience into account, and uses the drugs that you know your child tolerates well is the best way to handle anesthesia on a child. Annoyance #2 of the day is that we did not get our preferred doctor. Fine. This doctor seemed decent enough. He quickly asked us a bunch of questions and then asked us "how we usually do it." Assuming he was inquiring about the medication that Brady usually gets, we answered, "He does great with Propofol." A little side note...propofol is this awesome drug that will put you to sleep quickly, and when used correctly (not like Michael Jackson) allows you to wake up pretty quickly and feel back to normal in a short amount of time. Brady has had two other methods (Versed and using all gas) which have been terrible for him. One time we ended up back in the ER, then were admitted to the hospital for 3 days with a high fever, and the other time he woke up like a raging maniac and threw up for hours.
After I said the comment about propofol, the doctor said, "Oh, okay, propofol." I should mention that this doctor was Russian, with a thick accent. His resident was Japanese, also with a thick accent. Somehow I'm coming to believe that minimizing the language barrier in situations involving anesthesia is a very important issue. Anyway...moving on.
Matt accompanied Brady back to the MRI room where the doctor was really great with him. He put the mask over his face and told Brady that he could talk into it and Santa would hear him. Brady asked Santa for a blue bike and Matt said that he didn't cry or struggle at all. What a great boy. As they were getting Brady settled after he was out, Matt said to the doctor before leaving, "Propofol, right?" to which the doctor replied, "yes."
With 3 hours to kill, we decided to go and hunt down the requisitions that should have been faxed down days ago. After all, we have been doing this for how long? On our way, I get a cell phone call from the Oncology secretary who asks me what I need. I told her that Brady needs to have his urine and blood tested. She replies that she checked his chart and that he doesn't need those done. He has ALWAYS had these tests done, every single time. You all know this because I blog about it every time! She claims that another one of the oncologists looked at his chart and confirmed this. I told her that I think that is wrong, and that to me it makes sense to test his urine for the marker for, well, you know...NEUROBLASTOMA! Perhaps it is a good idea to check to make sure his body isn't producing a higher than normal level of these proteins. Maybe I'm just slow...
She tells me that she we gladly just do the req for the urine, so we head up there to pick it up. After a few minutes waiting, the secretary calls and says that indeed he does need the urine and blood work done. Imagine that. Annoyance #3 of the day.
We head down to the cafeteria, after dropping off the requisition to the nurse in the MRI, and try and pass time for the next few hours. He was in the MRI from 7:45 until 11:00am. The nurse comes out to get us and says, "Brady's back and has been awake for a while now. You can come back" We always, always, always get called back just as he gets back so that we are there when he wakes up.
I can hear him crying from the hall. We get there to find him totally covered in sweat and vomit, and he is completely purple on one side of his face, neck, and on his left hand. Brady has Horner's syndrome, a result of his last surgery, which interferes with his sympathetic nervous syndrome. When he gets hot or upset, his left side of his body doesn't sweat like the right, so he gets a literally line down his face, one side red, one side not. Often one hand is cold, while one is hot. This was the worst I had ever seen it. He was very upset and Matt immediately knew something wasn't right.
He asked the resident anesthesiologist if he had gotten propofol. The resident responded, "No, just gas." Well, Matt about flipped out on the guy and immediately questioned why this was done when we had told the attending two times, directly, that he needed to have propofol. The resident just kept apologizing, and saying that it was a misunderstanding. Matt was livid, I was worried, and poor Brady was really sick. He was just writhing, sweating, vomiting...awful. Big Annoyance #4 of the day.
After we unleashed on that doctor for a few minutes, he said he was going to get the attending. The nurse gave Brady another dose of antinausea, which at this point was no use. Brady is really sensitive to gas, and always responds with bad vomiting. After about 20 minutes the attending showed up. He calmly and repeatedly apologized, made excuses, told several versions of what he thought matt had said. He basically reasoned that there are several ways to use propofol, one of which being to use gas, then a little propofol, then gas again. He thought that is what we were referring to. He thought he was confirming with us to use that plan. There are like a million reasons why this shouldn't have happened. Here are a few:
1. Why don't these doctors look at Brady's chart. He has had these stupid MRIs done like 6 times now. Obviously we should have it down by now.
2. His interview with us before hand lasted all of 2 minutes. If he was unsure he should have asked more questions.
3. He actually admitted that the resident set everything up and had gas out to use. He claims that he always uses propofol on kids, but since the resident set up gas, and usually the gas is very effective and safe, that he just went with it. My suggestion, is to tell the resident what you want him to do. Seriously.
Brady threw up 4 times there, once in the hallway on the way out, and twice in the car on the way home. Vomitting while intubated can be dangerous, and vomiting when you are groggy can be dangerous. I absolutely hate to see my boy so sick because of mistakes. Last time he had scans we went out to lunch afterward and Brady ate chicken nuggets and laughed with us.
If you are still reading, thank you for allowing me to rant. Remember that I use my blog as a medical record. I can't tell you how many times I have referred back to it for medical information.
The moral of the story. Mistakes happen when dealing with humans. I make mistakes, you make them, we all do. I honestly can't tell you how many times I have encountered mistakes within the medical community. I hope that people who follow Brady's story learn from it that you absolutely HAVE TO stay on top of those providing your care. Ask questions, make your opinion heard, and don't take no for an answer if you know you are right. If I had a $1.00 for every time a doctor has apologized to me, I'd have a nice college fund going.
In important news, I have emailed the oncologist and will hopefully have results for you later today. Let's pray that the radiologist reading Brady's scans brought their A game today.
