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Enternal Feeding PEG Alert, Many PEGs now are MIC-KEY PEGs

   If you, a loved one or a friend have a need for tube feeding and have a need for a PEG, or have had one implanted, you need to know if it is a MIC-KEY PEG or not. If it is, it has a Anti-Reflux Valve in it, this is not to prevent the patient from getting Reflux from feeding, but rather to keep whatever is put into them inside and not allow any air or fluid back out the way it went in. Yes, therefore, when Doctors and Nurses perform what they call Residual Checks on patients with these MIC-KEY PEGs they must use a special Extended tip Bolus Catheter or will put the patient in extreme pain and cause the patient Reflux which will lead to Pneumonia and death with-in 6 months.

   I'd like to share this story with you of a lady who went through a horrible 6 month period of being murdered just as my Mother had exactly one year before her. I say murder because all of the Medical Professionals involved should have known about the MIC-KEY PEG and thus treated them appropriately but did not. My Mother also had a Boston Scientific EndoVive MIC-KEY PEG as Barbara had. I had the Care Manual that came with it and I tried to convince Doctors and Nurses to treat my Mother as the Manual stated, Not one would comply. They all treated this MIC-KEY PEG as a PEG with-out a valve, consequently filling her stomach with air before feeding each and every time by performing a Residual Check that they all said was necessary before feeding. Not one of them ever used an Extended tip Bolus Catheter as is stated in the Care Manual as (NECESSARY) therefore filling Mother up with air before feeding and causing her Reflux which in-turn gave her "incurable" Pneumonia due to the fact they would never comply with her Care Manual and insisted in filling her with air before feeding her the rest of her life?? 4 Nursing Homes and 5 Hospitals and all of the staff of each denied treatment of this MIC-KEY PEG as the Care Manual directed. I was even told that PEG CARE PROTOCOL was according to the Non-valve PEG?

   Please Read Barbara's sad story;

  

Adventures with a Feeding Tube Replacement: A Not So Funny Story, a...

Posted on January 6, 2013 by bbzinger

I have had a feeding tube since January 2012 because, thanks to ALS, I can not swallow food or liquids.  I have been nourishing myself since I got the tube. The tube is called a

Your dinner may look like this

PEG tube. I have a hole in my stomach to accommodate it.

A Clogged Feeding Tube

On Saturday, December 8, 2012 my tube became clogged. I couldn’t get anything through it. With the help of our hospice

My dinner (& breakfast & lunch & snack) come packaged this way

team, I ended up in the emergency room, where a knowledgeable and very kind doctor determined that he couldn’t replace the tube, but he could unclog it. He advised that I promptly contact the doctor who had put in the tube I had to find out about getting it replaced.

On Tuesday, December 11 (2 days after the ACLU awards ceremony  (the speech I gave at that event is the last blog I posted before this one), I was at the hospital to have my tube replaced by the same gastrointestinal surgeon who placed the original tube. Unlike the original tube, the replacement did not require me to be under general (or any)

What a feeding tube looks like coming out of guy’s body

anesthetic. That was good: I didn’t want general anesthetic because I didn’t want to risk being permanently on a ventilator after surgery, or to expose myself to the risk that general anesthetic would hasten the progress of my ALS.

The replacement tube can easily be put in (or removed) by pushing it (or pulling it) through the hole in my stomach. It has a balloon that holds it in place in the stomach.

That’s the good news. Also, the replacement tube was not clogged. Also good news. The rest of the news about this tube is not good.

A Little Background About Nourishing with a PEG Tube

The nourishment process involves several steps. All of them involve putting the tip of a fluid-filled bolus [think of a cartoon-sized syringe] into the opening of the tube that’s called

Boluses: not recommended for heroin administration

a port. These are the steps:

 

1) Close the clamp on the tube so that stuff does not come out when the port is opened to insert the tip of the bolus.

 

2) The bolus is filled with water that will be flushed through the tube. The port is  opened, and the tip of the bolus is inserted. The  clamp is opened so the liquid  can pass through. When the bolus is empty,  the clamp is closed before the bolus  tip is removed.

 

3) The bolus is filled with liquid nourishment that will be pushed slowly through the tube. This is repeated until multiple times until the amount of nourishment for the meal is consumed. The clamp is closed and opened and closed again with each bolus.

 

4) The bolus is filled two more times with water that is flushed throughout the tube. The clamp is closed and opened and closed again with each bolus.

Medications are also dissolved in water and put through tube, with a water flush preceding and following the meds.

The Replacement Tube

The replacement tube came with no clamp!  As you can see from the description above, this lack of a clamp is a big problem. If there is no clamp, there is no way to keep liquid from coming out through the port when the bolus is removed and before the port can be closed.

There’s a second problem: the port for receiving the bolus is very shallow, so the bolus can and does slip out, spilling liquid. The first time we used the new tube, I needed a shower afterwards.

With the help of the surgeon’s nurse and our hospice nurse, we obtained a surgical clamp to solve the clamp problem, but this requires two people when the tube is in use: one to hold the bolus securely in the port, and another to open and close the clamp.

The manufacturer of this tube, called an EndoVive, is Boston Scientific. I contacted the Boston Scientific rep for this area by email. In that message, I laid out the design problems

If this is defining tomorrow today, I’ll stick with today.

with the replacement tube.

I closed my email with the following paragraph:

“ALS patients have many problems. Boston Scientific should not add to those  problems with sloppy design. My previous tube had a clamp on it that I could  open and close easily with my thumb. It’s not rocket science. Boston Scientific should be able to quickly add such a clamp to the EndoVive product. While you are doing that, I believe it should be possible to modify the valve to accept a                    standard-sized 60 ml bolus.”

The Boston Scientific rep passed my email on to the person at the company responsible for managing this product. He agreed that the company should not be making products that make my day-to-day life (or presumably anyone’s day-to-day life) more difficult. In a telephone conversation with my partner Susie, he told her that he regretted that no one at the company thought of these issues. He also said there was not quick fix, since any changes to the design would have to approved by the FDA.

In the meantime, our contact at the California Home Medical Equipment, which supplies my nourishment and necessary

accoutrements, began to pursue solutions. He found a clamp that could be added to after the tube was in place, and an extension tube with a much deeper port. The only remaining challenge at the moment that is keeping me from being able to nourish myself is that my weakened hands can not close the new clamp. So, for that, I need help.

Of course, at some point, I won’t be able to nourish myself as the ALS progresses. But the tools needed by ALS patients and others with disabilities should be designed to allow them to function independently as long as possible. This feeding tube by Boston Scientific does the opposite.

In looking on line for other replacement PEG tubes that are balloon anchored (and therefore can be inserted without general anesthetic), I found several others, none of which come with a clamp. I could not tell the depth of the ports on those tubes from the information I found on line.

I am frankly appalled that companies and the FDA seem to think that these types of replacement PEG tubes are appropriate. It seems to me that there were never tested on patients or with caregivers who might know what the practical issues are. After all, I can’t possibly be the first person with PEG tube to have this problem. Why was this design approved in the first place?

A Call to Action

If you agree, send an email to the FDA Center for Devices at dsmica@fda.hhs.gov. Demand that the FDA consider patient needs in the device approval process.

   See, that clamp Barbara spoke of over and over and was interested in was never needed because she now had a MIC-KEY PEG. All of the Medical professionals ie Doctors and Nurses, she talked to about finding her one should have known. She had a MIC-KEY PEG replace a standard non-valve PEG and not one of her Doctors or Nurses knew or cared, thus poor Barbara passed as my poor Mother, passed with-in a short 6 month period of Pneumonia that could have been prevented with proper care of the MIC-KEY Buttons Apathetic Surgeons implanted in their bellies. Iwrite this to inform you so you, a loved one or friend will have the power of knowledge to avoid going through the hell these two beautiful ladies had to.

Views: 328

Tags: Bolus, Device, Enternal, Feeding, Medical, PEG, Tube

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Comment by Howard Rothermel on January 11, 2014 at 9:25pm

Please comment, your comments are welcome and appreciated.

Comment by Howard Rothermel on January 11, 2014 at 9:23pm

Please share your thoughts, experiences or ideas with us, this is an important subject matter to people of all ages. I'd like to recommend;  http://www.mic-key.com/resources/mic-keystar-care--usage-guide.aspx  and my preferred pump for all MIC-KEY PEG Patients: http://www.kangaroopumptraining.com/ , Please in the mic-keystar-usage-guide pay close attention to the What MIC-KEY* Accessories Do The MIC-KEY* Extension Set section, this section refers to the extension that opens the valve for performing Residual Checks required prior to feeding and the only way a Residual Check can be performed on a patient with a mic-key.

Comment by Howard Rothermel on January 11, 2014 at 5:16pm
Comment by Howard Rothermel on January 11, 2014 at 5:01pm

    God Bless everybody who for whatever reason loses their ability to swallow and requires one of these devices. I strongly recommend anyone requiring one make sure upon leaving the initial consultation with a Surgeon that he does not implant the MIC-KEY PEG. I strongly WARN against these Enternal Feeding Ports.

   I can with certainty tell you this as I experienced personally 24/7 along side my Mother the Blantant Ignorance of 99% of the Doctors and RN's that treated her MIC-KEY. I had the Care Manual with us at all times and tried to impress upon them the Life/DEATH seriousness of treating these medical devices as per the manual. Over and over they were insulted and went on treating the MIC-KEY PEG as if it were a PEG W?O ant Anti-Reflux valve in it. In acting insulted and jealous me because they had the schooling I didn't they put my Mother and others through severe pain, suffering, neglect, and thus judgmental Death. 99% of the Doctors and Nurses  want us to believe that one with a feeding tube has no quality of life left, I was told over and over. I beg to differ.

   Medical devices are designed to extend the quality of life and the life expectancy of individuals who require them. They all come with Care Manuals and I ask all who read this to demand these manuals be followed. When will enough be enough. There is no excuse for this kind of blatant ignorance in our Medical Communities. It's careless, Apathetic, punishing, abusive, neglectful and last of all murderous. You would never believe the stories Doctors and Nurses told my wife and I to cover up the real cause of Mothers deadly pains(Treated with Morphine)they caused her through mistreatment of her MIC-KEY PEG. Then there was the incurable Pneumonia brought on by the same mistreatment that was curable if they would have followed the Care Manual Instructions that came with her Port. I pray for change ASAP, ignorance is unacceptable.

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Now the works of the flesh are evident, 

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idolatry, sorcery, hatred, contentions, jealousies,

outbursts of wrath, selfish ambitions, dissensions, heresies, envy,

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