Waiting for surgery with my nasal feeding tube

Posted on Thursday, March 6th, 2014 at 2:09 pm

Now that I have prepared for surgery the next step is now waiting for surgery.  It is a daily wait and see now, usually starting with waiting for the team of Doctors to visit and tell me any updates about my condition, my well being and of course any information about when surgery may be happening.

So far a date for surgery has not yet been given, in my 15th day here which is also my 19th day straight in hospital it is becoming a longer wait than what we had hoped.  Having said that there has been a few complications.

I was required to have a Nasal tube inserted to enable a high nutritional fluid to be fed to me to help build me up for both surgery and post surgery.  I was informed I would be taken down to have the tube inserted which would be done under a twilight type of sleep state, so I was thinking that that should be fine.  However I get down to Radiology to have the tube inserted, but I am told I will be awake for the procedure.  To add to the complication the anesthesia they use is one I am allergic to which is called Lignicaine, I have a severe burning reaction to it.  I ask for an alternative anesthesia but I am told there is none they have so I am told they have to do it without, I am told to prepare as it is very uncomfortable while being inserted.

The pump and feed tube linesUncomfortable! Rubbish it bloody hurts, the more he shoves it down my throat the greater the pain to the nose near where it aligns between your eyes, it’s both a burning and aching type of pain and it just keeps getting worse as the tube is pushed in, pulled out twisted and shoved every which way until they get it to where it has to be.  Add to that there are several stages of having to swallow hard to help get the tube down, feeling like you are going to throw up, a very soar throat as well as it rubs against the back of the throat, sneezing as its pushed in and then the constant watering of the eyes, not tears but just watering which is a reaction to having the tube inserted, having said that maybe there were a few tears, it bloody hurts.  The ordeal is over after about 15 minutes, even though it felt much longer.  I vow to never have one of these inserted in me ever again.

It took about 24 hours for the pain in the nose to settle down, however the throat soreness is constant still after 24 hours plus you continue to want to swallow with the tube still rubbing against the back of your throat which also makes it a tad painful at the same time.  I am still able to eat orally but it is an awkward feeling as when you eat something and swallow it feels like it is still stuck in your throat.  The dryer the food the worse it is, however if it is a sticky food it will often attach itself to the tube in your throat and make you feel even worse.  Yes I hate these things, especially as this is not the end of the drama with it.

My Jevity liquid dietSince having the Nasal Feeding tube in there has been feed errors constant, even after doing a flush it continues to come up with a feed error.  Nurses blame it on the Jevity liquid that is being fed to me as it is apparently thick and can clog up the tube that is inside me.  To clear it they have used several different sized syringes filled with water to try and clear the line, which appears to work for a short while but it is still having feed errors not that long after, usually about 30 minutes.

After watching the nurses many times start, restart, shut down and reset the pump it was not too long after that I ended up doing that myself.  Same with the flush attempts with the syringes filled with water of which I started to do myself instead of annoying (or waiting for) the nurses every time it beeped with the feed error.  I had also tried clearing the tube line with Coke Cola, that was a suggestion by one of my Doctors as the acid and fizz often clears any Jevity clogs.  I went through a can and a half before I gave up on that as a solution.

After three days of trying to keep this going I had enough and turned it off, this included telling the doctors about the issue.  I also had three late nights to which I ended up turning the machines off as I needed sleep, those times were 2:00 AM, 1:00 AM and then the last night I needed sleep so that was at 9:00 PM.  The nurses agreed with me when I turned it off.

The Doctors finally decided to send me for an x-ray to have a look at where the tube is positioned.  While I had considered this before I was not sure there would be any issues with the line inside me as I was told it would be anchored in there so it does not move.  So the x-ray shows that the line is looped and this may be the issue, so I get back from the x-ray and after a short while the tube is pulled out about 20 cms and trimmed which I assume is meant to remove the loop.

The line is re-flushed and then set to run again, but within 15 minutes we have another feed error, so more flushing is done and reset and still no luck.  Later that day a second x-ray is done and this time a kink is clearly seen which is probably what has been the issue the whole time, they just did not see it in the first x-ray.  I’m told that it may need removal and a new tube inserted to which I said that is fine but ONLY if I am sedated as I am not going through that again.  That is agreed to so I am sort of optimistic that this will be ok.

The following morning I am sent to Radiology again to have the tube fixed, guess what no sedation, no anesthesia either, I make my case but what can you do lying on your back with the person doing it already holding the tube.  They were going to try inserting a cable down the tube and try and straighten out the kink, but to do this they have to pull out about 40 cms, better than 160 cms but still hurts.

I get back to the ward, a new flush is done of the line is done and the feed restarted, I am happier to say that so far (touch wood) that the feed is working and no more clogs or feed errors, the occasional battery low alert when I go for a walk but that is the only issue so far (crossing fingers too).

Hopefully now I can gain a little weight while having the tube working which will help me during and post surgery.  I am not sure for how long this will be but I can say the tube is now not as irritating as it was the first few days, would still prefer not to have it but I need to so here we are :).

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One Response to “Waiting for surgery with my nasal feeding tube”

  1. Donna Says:

    Ew, I mean, Good luck!

    -Donna

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