The Waiting Game


I have a gastric-jejunal feeding tube and every month the silicone balloon holding it in my body breaks. Every month I go through a process of it breaking and having to get it switched out to a new one. Come and follow me on this process.

It’s late at night and I’m getting ready for bed. I notice that my tube is dangling out of me more than it should be.  I decide to check the water level in the balloon crossing my fingers in hopes that maybe this time I am just losing my mind. 

What is supposed to have 8mls of water in it turns out to only have 1ml. 

Maybe if I just put some more water in it I can magically make it last? Maybe the water will last at least a few hours and I can keep doing this?  I don’t want to have go to the hospital again.  I don’t want to go through the trauma of being allergic to just one.  More.  Thing. 

I fill it with water and go to bed. It’s a few hours later and I roll over in my sleep.  Something is off.  Please be dreaming…Can this just be a nightmare, please?  In the morning I get up with my tube hanging a few inches out of me when it is supposed to be snug against my body.  I sigh and grab the Tegaderm tape.

Now begins the 1-2 day course of getting the replacement scheduled and another couple of days to wait for my appointment.  First I call my specialist’s office and put in a request for my GI (gastrointestinal) nurse to call me. 

Now I sit and wait.  Could be an hour or it could be 24 until I get a call back. 

Once I do get a call back, I explain that the balloon on my tube has broken (again) and I need a referral to my hospital’s interventional radiology department for a gastric jejunal tube replacement.  My nurse then forms the order and sends it over to my hospital. 

Now I wait for the scheduling department at the hospital to call me. They ask some questions to confirm my address, date of birth, insurance, etc. and then they send that over to my insurance company for it to be approved. 

And so begins the few days of waiting for my insurance to approve this request... 

Once it is approved scheduling phone me to actually schedule the procedure. I can usually get in within 24 hours but sometimes it can be up to three days. That’s three days with my tube hanging out of me.  Hooray! 

I finally have an appointment scheduled, and now I await the interventional radiology nurse to call me to tell me the ‘night before’ procedure rules and I always confirm with her that they have my type of tube and tube size in stock so I don’t end up wasting my time showing up only to be told they don’t have it. 

I couldn’t drop off the night before 
the last Procedure Day.  All
I could think of was how a 
few weeks previously during 
a tube change, I stopped breathing. 

Wish Me Luck!

If my tube was in the right place, on the eve of the procedure, I’d run some formula through and some fluids so that I stay hydrated and have some veins for when my medical team attempt to start an IV. 

I pack my hospital bag with a jacket, phone charger, headphones - and epipens (remember the allergic reactions I mentioned earlier?). Then I lay out my comfy pants, fluffy socks, turn my fluids off before midnight and, having completed all the tasks needed to be done for Procedure Day, I set multiple alarms for procedure day.
It’s time for some sleep (hopefully). I couldn’t drop off the night before the last Procedure Day because all I could think about was how only a few weeks previously during a tube change, I stopped breathing. 

I hadn’t felt nervous before that one. Used to reacting to something different whenever my tubes are changed every month, I had still been hoping that one would be the last one until my surgery this month. 

I’ll let you know how that goes, though it may take me a while to post it depending on my recovery and how my body gets on with the new tubes. 

To read more from guest writer Sarah, go to her website -
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