Those of you who have been following the story of my PEG will have seen my previous two posts:
As described previously it looked like my first PEG had embedded itself into the lining of my stomach after only fourteen days. The general protocol with a PEG is that after fourteen days the PEG should be pushed a short way back into the stomach and rotated. This shouldn’t be done any sooner as the tract needs to form between the stomach and the outside world. Any sooner and there can be complications with the internal layers not knitting together properly and there is the chance of infection.
Last week I had an endoscopy to check that the bumper really was embedded. This has to be the worst thing I have experienced since becoming ill. As I lose the ability to breath if I am sedated and laid flat the endoscopy had to be done whilst I was wide awake with just some numbing spray for the back of my throat. I felt as though I was going to choke as what has to be the largest camera in the world was pushed down my throat. At one point I thought I would throw up, and wearing a month guard and with a camera in my mouth I was not sure where the vomit would go, except back into me.
I cannot praise the nurses highly enough. The one with me kept talking to me, assuring me everything was okay and keeping me as calm as she could while the camera went down. Once the camera was down it was not as bad. Until the camera is brought out and then you have to go through the whole gagging process again.
So we now had confirmation that the PEG was embedding but that for the time being it was still working. I was told to continue using it until I could return for a new PEG to be fitted under general anaesthetic five days later. If at any point I was in pain through using the embedded tube I should go to A&E. This did not fill me with joy as so far this had always meant a four hour wait to then meet a doctor who knew nothing of PEGs and who couldn’t help me.
So I then arrived at the hospital five days later to have the new PEG fitted. The plan for the old PEG? Well they would try and pull it out but if that didn’t work then they weren’t sure what to do.
I had been nil by mouth since 10pm the night before. With a Trachi getting dehydrated can cause coughing and a lot of discomfort. There were three people waiting at 7.30am to see the same doctor and I was the last to be called. I finally went into surgery at 12.30pm. I know there is a list and therefore we can’t jump the queue but at the very least they could have let me have some water or some I.V. fluids rather than leaving me fourteen hours without anything.
Finally I was taken into the theatre and put to sleep. Imagine my surprise to discover upon waking that I now have two PEGs.
It took five hours for the registrar to arrive and to explain that they had been unable to remove the old PEG put hadn’t cut it off and left it in. She couldn’t explain why as the doctor who completed the surgery had already left the hospital to go on holiday.
The next day I was in a considerable amount of pain. I was sent for an x-ray and then doped up on Tramadol. The nurses were going to come and clean the wound and show me how to care for it, but unfortunately they were too busy, so left me with two wounds encrusted in dried blood for another day.
The day after that I was sent for a CT scan and when that didn’t explain the pain they decided to send me home with some pain killers. I have still not spoken to the doctor and there has still been no decision made as to the way forward to stop the second PEG from embedding in my stomach wall as the first did.
The treatment so far has very much been ‘well the first PEG shouldn’t have embedded, so we’ll just hope the second doesn’t.’ I have a doctor who was more intent on leaving for his holiday and who has left no instruction as to then next step with his junior doctors or his registrar. He is going to ring me tomorrow but I won’t be holding my breath on that phone call!
So keep tuned for the next instalment of how not to fit a PEG and remember if you have the choice stick with an NG tube.