G-tube Care and Pointers

Instructions about care of g-tubes was woefully short 9+ years ago when Little Miss got her first one. Doctors, nurses, surgeons, hospitals all fell short in helping us know how to best manage a g-tube.  I have learned many things:

1. Keep it dry as much as possible. Even let the sun get to it once it is healed. At night when sleeping, uncover the area to allow air to circulate.  One of our biggest problems emanated from too much moisture seeping out and onto the skin.

2.  Once the site is healed, bandages and ointments are not usually needed. A “flat”/low profile button is easier to manage than one with a tube protruding.  If ointment is prescribed for hypertrophic tissue, etc. be SURE to get it only on the designated area.  (Yes I have a story about this.  Maybe another time.)

3.  If anything looks strange, have your doctor LOOK AT IT. (Yes I have a story about this also. Maybe another time.) All the verbal description you can manage doesn’t compare to having it eye-balled by a doc.

4.  Check the balloon volume every 4 – 6 weeks. How does the volume reduce?  I don’t know.  But it does.  If it has reduce significantly there must be a leak and it is time to replace the button.  Little Miss’s balloon has 4 cc or ml of water in it usually.  This is enough to keep the whole thing from popping out, without taking up too much space in her tummy. 

5. Insist with your insurance company that you need at least two spare buttons on hand.  We had only one spare years ago and when we had to change the button and the new one leaked we were up a creek.  Currently, we have two at home and one at school. Just in case.

6. Keep an old button and glue it to the tummy of a doll.  You can even punch a hole in with a nail or any of multiple tools and render a doll g-tube fed. This was helpful to our daughter although she doesn’t care about it now, at nearly age 11.  Kids always like knowing they are not the ONLY ones!

more pointers to come…. stay tuned.  If you have any questions, just drop me a comment or email!


Managing Fear in Medical Emergencies

Emotions in medical crises are predictable and manageable! Expect to feel any/all of the following:

  • Fear
  • Anger
  • Suspicion
  • Helplessness
  • Discouragement

When our body, or the body of a loved one, signals trouble, fear arrives on the scene faster than an ambulance! Fear can be an overwhelming emotion, blocking our ability to make sound decisions and ask good questions.
What do we fear?

  • What might happen
  • A repetition of what has happened in the past
  • The unknown
  • Inability to control the outcome

Fear has a tendency to help us jump to worst-case scenarios. Dread takes over and can move into panic.

Anger is often present. Frustration with a recurring problem, and/or dislike for the feeling of fear can help us to move into anger. Anger is a more comfortable emotion than fear, so we go to anger.  We feel more in control when we are angry.

Suspicion can also arise out of our fear and anger because we wonder whether our situation can actually get better, or will it get worse, how much the hospital or medical staff really knows, cares, pays attention, etc. Helplessness and discouragement arise when we fear we have a limited ability to affect the situation.

All these emotions are very useful! They alert us to the reality of a problem we need to manage. When we switch into management mode, the emotions can recede, allowing us to think clearly.

To switch into management mode, it can be helpful to briefly recall a skill you acquired during your adulthood. For instance, balancing a checkbook, finding a mortgage, painting a room, choosing car insurance , etc. Imagine yourself actually performing that skill. This thought process can help you switch into a more confident, competent frame of mind. Managing a medical crisis, talking to doctors, participating in the decision making process all require a degree of confidence. You do not have to understand everything about a mortgage to choose one. You do not have to understand everything about your body and medicine to make wise decisions.

Here’s an example from my own life. One of my sons at age 6 traveled with us by airplane. On the return trip, his ears hurt to such an extent he could not stop crying. Drinking water, chewing gum, yawning were of no help whatsoever. He was a little better at home, but within two days he had added fever, headache, and stiff neck to his earaches. Of course this all culminated at 7:00 on a Friday night: too late to call the doctor for an appointment! I knew these were the symptoms of meningitis. I was quite scared because meningitis can be fatal within a short time, and/or difficult to cure depending on which type of meningitis is present.

I needed to comfort my son and my husband and make some decisions with the doctors. If my son could sense my fear he would become more afraid, making exams and tests more difficult. I had to calm down. I took deep breaths, focused on being in capable-adult mode and calmed down. The fear was still present of course, but not in control.

At the local emergency room, we began a series of tests. After several tests telling us next-to-nothing, the ER doctor wanted to do a lumbar puncture (also known as a spinal tap). In this procedure, which is rather painful, a needle is inserted between two bones in the spine, directly into the spinal cord to obtain fluid. Examining this fluid determines whether meningitis is the correct diagnosis. It seemed critical to rule out or confirm this disease.

Something inside told me this was not meningitis. I trusted myself. I began to ask questions. I said “No” to the lumbar puncture. It was the right decision. The ER doctor sat down and reviewed the history, reexamined my son and came to an accurate diagnosis. It was not meningitis. Treatment resolved the symptoms within 48 hours and health returned within 10 days.

If I had not pulled out of fear mode, the doctor would have performed the lumbar puncture. Ruling out meningitis through that test, the doctor would still have to sit down and rethink, reexamine my son and find the correct diagnosis.

Take time to breathe and become clear-headed in emergencies. It will serve you and your loved ones very well.

A relaxing evening at the hospital?

Yesterday I had arranged for an outing with my two children.  We went to the home of  dear friends to spend the late afternoon and evening.  Pizza, popcorn, dog tricks, games, conversation!

My phone rang.

After general anesthesia a person can expect pain for the first couple of days as the body processes the excess air. Pain continuing beyond that needs to be checked out: I took another dear friend to the hospital to have her post-surgical pain checked out. We were in an exam room in the E.R. for roughly four hours.  She was sent home with an “all clear” and painkillers.

I went home renewed and re-energized!  How could that be?!?!?!  Well, although I was at the hospital:

  • it was not for my daughter!  
  • I enjoyed 4 hours of nearly uninterrupted conversation with a dear friend.  
  • My children were in great hands and happy (and the dog too, as she went along). 
  • My husband was home taking a nap!  

By the time I arrived home:

  • my daughter was fed and asleep
  •  my husband had left for his night meeting
  • my son was relaxed, fed and happy
  • my hospitalized friend was home and reassured. 

All good. 

What an odd way to get time to rejuvenate.  But I’ll take it!  Whatever works. =D