Mar 30, 2012


Manny's gallbladder has been out for almost five weeks now.  The surgery site looks great and he seems to have little to no pain.  Then again, he wasn't acting like he was in pain before the surgery either.

In fact, remember how I told the story of right before and after the surgery?    Even a few minutes before the surgery, he was playing, laughing, just being himself.  The surgeon and I even discussed how well he was doing and how the gallbladder would still need to be taken out, even if it's not all that bad.  Then after the surgery, the surgeon was on the verge of tears as he recounted how "sick" the gallbladder was.  He was struck by how happy and "normal" Manny was acting when he MUST have been feeling horrible and in a lot of intense pain. 

Well, I asked for a copy of the Pathology report.  I now know why the surgeon was so emotional.  The gallbladder was "gangrenous necrotic"  ... Here is the definition: 

Gangrene is a serious and potentially life-threatening condition that arises when a considerable mass of body tissue dies (necrosis).

In other words,  parts of the gallbladder had died.  The report went on to describe just how damaged the gallbladder was and that it was indeed leaking contents. 

The mortality rate of this condition is very high ... well over 50%. 

I feel like we dodged yet another bullet. 

I also can't help but wonder about his level of pain.  Is he in pain all the time but is just so used to it that he doesn't complain?  I mean, he MUST have been in horrible pain and felt very, very sick. 

The other news I have is about the Ethanol lock.  I've mentioned it before but here's a bit more about it.  He has the broviac which is like a "tube" in his body.  This tube delivers medicine, TPN, etc. right into the bloodstream via a vein that dumps right over the heart.  So an infection in that line would be very dangerous (like what happened in December). 

While TPN is running, it's difficult for things to grow in the tube but when it's off, things can grow.  So a medical grade Ethanol solution is supposed to go into the tube.  Think of it like a straw.  They take exact, precise measurements of the length of this tube and then put in that exact amount of Ethanol.  It's not supposed to go into the bloodstream ... it's supposed to just fill the tube. 

Manny is on TPN for 18 hours a day and off for 6 hours.  So during those "off times" three times a week, I am supposed to administer that exact dosage of ethanol to reside or dwell in the tube.  When it's time to hook him back up to the TPN, I am to withdraw the Ethanol and flush the tube with saline thoroughly. 

If ever someone accidentally pushed the Ethanol into the bloodstream instead of withdrawing it, they are to immediately flush flush flush with saline solution and file an incident report. 

It's been a series of events over MONTHS that has included me in the determining of the protocol of this for him.  I'm friends with the person who is in charge of the IV team and we're even going to have an article about Manny and his Ethanol therapy.  So she included me on everything.  How they came up with the amount to be administered, when, how, why, etc.  I was involved in every step.  I've read the articles and clinical trials.  I've been trained on how to do it along with the nurses at the hospital. etc etc. 

Manny was the first kid to have a protocol written IN this hospital.  So the whole thing was a big deal.  They ran it a few times in the hospital before we were discharged.  All went well. 

March 5 was to be the first time I administered it to him at home.  About an hour before the dosage was due, I was going over the protocol to make sure I did it perfectly.  I pulled out the prefilled syringe of Ethanol and was in shock. 

It was the wrong dosage. 

It was 7 times the dosage that it was supposed to be. 

To be precise ... the dosage is 0.3 ml.  (That includes 70% ethanol and 30% saline).  I know that number off the top of my head only because of how many times the IV team and I discussed it.  How they arrived at that number.  I watched them administer it. 

But the syringes given to me said "Ethanol 1.43 ml, Saline for total of 2.0 ml"

What Mom questions the dosage given to their child in a prefilled syringe?  I mean, I've NEVER before been around for the discussions of the dosages of medicines given to my kids.  I'm just told to give the med. 

And I began to wonder what a lethal dosage was.  Afterall, only .3 is supposed to go in since that is the length of the tube.  But in this case, 2ml would have gone in, in other words ... 1.7 would have been into the blood stream and the .3 in the tube.  It would have gone straight to his heart ... and because I wouldn't have known the error, I wouldn't have known to flush flush flush and get it away from the heart. 

And let's say he survived this initial dosage, I am supposed to administer this 3 times a week.  how long before this would have proven too much for his body?  Once?  Twice?  A week?? 

It FREAKS me out that he could have died ... and it would have been

It's by the grace of God alone that this was caught!  


Since the error the error I have had an interesting ride. As soon as I discovered the error I called the pharmacist to let him know. He talked  about everything BUT the overdose. (I was still in shock I think.)  That night the nurse was there to draw labs. She told me the pharmacist had called to talk to her about it and I felt relieved.  I showed her the syringe and she was in shock. Apparently, he didn't mention the overdose.  I knew I'd have to pursue it.  (Sigh)

I HATE that I have to go confrontational.  

What I want?  Manny to be safe.  Plain and simple. 

The nurse and I decided it would be best to handle it "In house."  If SHE had been the one to discover the error as she was about to administer the medicine, she would have had to call the pharmacist, alert him of the error and file an incident report.  I felt that was the best way to handle it. 

Except, the pharmacist started denying the problem.  Started saying things like the script said X and Y.  (Which it didn't ... I kept the syringes with the wrong script.)

So the nurse borrowed one of my syringes (I had three wrong ones) and took it to her nurse manager on March 28. She got the script out of the file (which had the dosage on there clearly) and handed it along with the syringe to the nurse manager and said, "What do you think?"  At which point, the manager gasped ... it's not a small error. 

They called in the pharmacist.  He then started hemming and hawwing saying he had actually TOLD me to do X and Y.  Now he's actually blaming ME for the issue.  That is not OK.

Cool part is ... the people at  the company knew me well enough to believe me.  This is a man who works with them and they believed ME. 

He called me and left a voice mail about how he wanted to "set me straight." I was VERY upset. 

So March 29 I decided to take matters in my own hands and sent a letter.  I'd been keeping all the details in a letter as time went so I didn't miss something.  I sent it to the pharmacist directly.  And I prayed a lot.  I wanted him to have the letter first so he would know what I was thinking and what I was feeling and the details (from my perspective). 

March 30, I called the Pharmacist.  He apologized!  He thanked me for telling him.  He told me how thankful he was that I caught the error.  He already filed the proper paperwork about the incident with corporate so they can make a systems change. What a difference a day makes!

I was kind.  I was forgiving.  Afterall, I wasn't after his  job, I want him to be better at his job. I want him to be 100 times more careful than he ever was before. 

I think the way I handled it was a "witness" to him.  He saw my heart. 

And I think it's finally "Over". 

1 comment:

  1. When my son was an infant we had a very similar issue. I don't know why, but before leaving the pharmacy I opened the bottle to find an adult suppository that I was suppose to administer to my 6 month old child. ARE YOU OUT OF YOUR MIND was my first thought, I went back asked to see the script and realized that instead of 1 mg my script was filled with 10 mgs. I picked up the correction (with out an apology) and like you did the son would have died in the night. I was furious and wrote to the pharmacy and the state board. It's amazing what a sincere apology can do