Friday, October 15, 2010

The Post in Which I Rant About Hospitals

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.


  1. Ugh Meg, that is so frustrating and upsetting!! I would be just as livid as you guys are! You are SOOO right, and that as Brady's mom you HAVE to be his advocate and stay on top of things.

    But like you experienced today, even when you have done all you can (remind the guy over and over again of what to use), mistakes are still made. God's grace is enough to carry us even though the hardest, scariest and most frustrating times!!

    Praying for great results and that Brady is feeling better!


  2. I am so sorry to hear that today didn't go as planned. Managing medical care is difficult when all goes well, so I can only imagine the frustration when mishap after mishap occurs. Sending good thoughts to a clear scan.

  3. seriously! that's awful, you really have be your own health advocate. can you imagine how the parents that are not as educated as you fare in these situations...

    i'd be livid too. but you did the best you can, and i hope brady bounces back soon and most importantly that the results are great.

  4. I'm so sorry you all went through this. Brady has been through enough that he should not have to deal with this!

    I so agree that it is our responsibility to make sure we stay on top of the medical community. I know many times when the kids were in the NICU and when Bethany was in the hospital with meningitis I caught the nurses almost giving the wrong amount of medicine! I always checked the amounts with them!

    I hope this never ever happens again. Praying for you guys always.

  5. It is a shame that today's physicians are so busy that they do not take the time to get to know their patients even just a little bit. If they had taken a few minutes to actually read Brady's chart or even a portion of it they would have known from the beginning of his sensitivity to gas and other sleep inducing medications. We had a simular issue with a pediatrician many years ago. After going through agony twice I began advocating for alerts to be placed on the chart as a reminder that people were sensitive to certain drugs. Once I started advocating, I actually haven't stopped. I do it daily at work and with my parents. I am glad you and Matt continue to agressively advocate for the safe care of your children. I hope Brady is better soon. Prayers continue for you all.

  6. UGH times 2! As a mom of a 36 year old that is going through a tough time and advocating for him, it is crazy what mom's ( and dad's) have to do to get everyone on the same page!

    Sending hugs and prayers!
    Deb R.

  7. Oh, terrible! Write a note in large letters and pin it to Brady's hospital gown the next time.
    But meanwhile, I am sure that Santa heard Brady...every word. :-)
    Prayers, as always.

  8. PS. RANT ON! This is your boy, and you need to keep on speaking up and protecting him.

  9. Oh Meg, I know you know that I can SO relate to ALL that happened today. Been there, done that...with my husband...with my son...with my mom...different hospitals, different Dr.'s, same outcome...needless suffering. Can I share a sentiment that carried me thru everytime? That verse at the end of the "Footprints" poem when the man saw just one set of footprints & thinking they were his own, asked Jesus why He deserted him in his time of need..."It was then that I carried you..." My prayer tonight for you & Matt, & especially little Brady is that you will feel the arms of your Lord carrying you...Love you girlfriend.

  10. You shouldn't be surprised to know that I read EVERY single word you wrote.

    Yes, the medical community is made up of humans but like you, we have found staff speaking English, clearly, certainly make our job as parents easier.

    I was awake at 2am. That is about noon your time. I said some prayers that all would be going well for Brady. Maybe I should have prayed harder?

    Big hug from this side of the planet.

  11. Unbelievable. It makes me so scared for the patients young and old that don't have an advocate. Blessings.

  12. Meg so sorry that all three of of you had to deal with all of this. Especially Brady. One thing I have learned from personal experience, is that you and Matt need to report this to the head of anesthesiology and the head of the hospital. If you do this it will be highly unlikely these type of unexcusable events will happen again. I have had to do this myself and the next time I was in the hospital things were much better. The squeaky wheel DOES get oiled---and I know Mama bear can be very squeaky... Love You Nicole
    p.s. Praying Praying Praying

  13. Thanks for sharing Megan. Trey has his MRI next Friday at Stong and we, too, always get a little nervous with the anesthia preparations and how well the docs are/aren't referring to Trey's history and previous medicines. We will be extra diligent for sure now. Hope Brady got back to normal quickly.

  14. Oh, mama. What a horrible day. I've been praying for you since I saw you at MOPS Tuesday morning. Something about you grabbed me and you've been on my heart all week.

    Good for you for ranting. One of your objectives here is to advocate for children, and sharing your experiences with the rest of us will help us to be better and stronger voices for our children. We need to be reminded to follow up on every.single.point.every.single.time.


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